Beacon - User contributions [en]

Belgium

2023-08-30T15:17:55Z

Akemi: /* Database: AIM-IMA Échantillon Permantent(e) Steekproef (EPS) */

== Cancer Centers ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
</div>

== Healthcare System ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

Belgium's healthcare system is a compulsory, social health insurance system. It operates under a model that combines both public and private sectors, with a blend of universal coverage and income-based premiums.

The system is managed by the Ministry of Health at the national level, composed of the Federal Public Service for Health, Food Chain Safety, and Environment, and by regional governments in Flanders, Wallonia, and Brussels-Capital. Health insurance funds, known as "mutualities," are responsible for the management of the social health insurance system.

The Belgian population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, mental health services, dental care, maternity care, rehabilitation services, and prescription medications. Preventive care and health promotion services are also provided. There is no gatekeeping system in place.

All Belgian residents are required to join a health insurance fund, which is typically linked to their employment or their family's employment. Access to healthcare benefits is granted upon registration with a health insurance fund, and coverage extends to dependents as well. The system is funded by income-based contributions from employees, employers, and the government, ensuring comprehensive coverage for all citizens.

Belgium has implemented a nationwide electronic health record (EHR) system called eHealth. This platform securely centralizes patients' medical records, allowing healthcare providers to access and update relevant information. Data from insurance claims, registries, and other sources is also collected and stored in the eHealth system, which aims to improve the overall efficiency and quality of care while maintaining patient privacy.
</div>

== Administrative or Claims Data ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: AIM-IMA Healthcare Data ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed health care services provided to members of Belgium's seven health insurance funds under compulsory health insurance.

'''Type of information:''' [[Data Dictionary: AIM-IMA Healthcare Data]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Gz].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' October 2005 onwards.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Pharmanet ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed drugs and medical devices dispensed in Belgian public pharmacies for members of the seven health insurance funds.

'''Type of information:''' [[Data Dictionary: AIM-IMA Pharmanet]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Fu].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' 2004 onwards.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Échantillon Permantent(e) Steekproef (EPS) ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To provide a longitudinal compilation of administrative health insurance data for federal and regional partners in Belgium.

'''Type of information:''' In the EPS database are all the variables available in the Population, Healthcare, Pharmanet and Hospitalizations databases [https://metadata.ima-aim.be/fr/app/bdds/Ps].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 2.5% of the Belgian population (2019: approximately 285,000) and an additional sample of 2.5% of the Belgian population aged 65 and over (2019: approximately 56,000).

'''Date Range:''' 2002 onwards.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].
</div>

== Registries ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: Belgian Cancer Registry ===

'''Sponsor, manager or home institution:''' Belgian Cancer Registry.

'''Primary purpose:''' To collect and provide information about cancer in the country

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Cancer incidence, sex, age-specific, age group, year, tumour type and region [https://kankerregister.org/default.aspx?PageId=642].

'''Source of Information:''' Healthcare facilities that have oncology care programs and provide services for pathological anatomy are required by law to collaborate with cancer registration.

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' Head and neck (C00-C14, C30-C32); Oesophagus (C15); Stomach (C16); Colon and rectum (C18-C20); Liver, galbladder and bile ducts (C22-C24); Pancreas (C25); Lung (C34); Bone (C40-C41); Malignant melanoma (C43); Breast (C50); Cervix uteri (C53); Corpus uteri (C54); Ovary (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Meninges, brain and central nervous system (C70-C72); Thyroid (C73); Hodgkin lymphoma (C81); Non-Hodgkin lymphoma (C82-C86); Myeloma (C90); Leukaemia (C91-C95); Myelodysplastic syndromes – Myeloproliferative disorders (MDS-MPD); Invasive tumours (excl. non-melanoma) (C00-C43, C45-C97).

'''Open data access:''' Partially publicly available [https://kankerregister.org/default.aspx?PageId=642]. Instructions to request data for restricted content [https://kankerregister.org/Requesting%20specific%20data].

'''Information/Contact for data request:''' Contact information [https://kankerregister.org/default.aspx?PageId=614].

=== Database: StatBel Cause of Death Registry ===

'''Sponsor, manager or home institution:''' Statistics Belgium.

'''Primary purpose:''' To compile statistics on causes of death in Belgium using statistical declaration-of-death forms and WHO's ICD-10 coding.

'''Type of information:''' Cause of death and number of deaths, month, year, age group, sex, and region [https://statbel.fgov.be/en/open-data/causes-death-month-sex-age-group-and-region]. Further sociodemographic and medical information is available on request, both for citizens in aggregated form and for scientific research in the form of microdata.

'''Source of Information:''' Statistical declaration-of-death forms (Model IIIC and Model IIID) that are filled out by a certifying physician and completed by the municipal administration of the place of death for every death that occurs in Belgium, which are then forwarded to the Communities and aggregated by AD Statistics to compile the statistics at the federal level. In addition to the death registration forms, the data are supplemented by information on deaths registered in the RNPP (National Population Register). See documentation [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#documents].

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1998 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#figures]. Instructions to request data for restricted content [https://statbel.fgov.be/en/about-statbel/what-we-do/microdata-research].

'''Information/Contact for data request:''' Contact information [https://statbel.fgov.be/en/contact].

== Clinical Practices Guidelines ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== KCE Guidelines ===
'''Sponsor, manager or home institution:''' Federaal Kenniscentrum voor de Gezondheidszorg.

'''Primary purpose:''' Provides evidence-based recommendations for management, diagnosing, treating, and following up of many types of cancer.

'''Type of information:''' Guidelines information about management and quality of life of cancer patients, diagnoses, treatment and follow up of many types of cancers, such as breast cancer, renal cancer, ovarian cancer, bladder cancer, etc.

'''Access to information:''' List of guidelines [https://kce.fgov.be/en/publications/all-reports-0?f%5B0%5D=alle-kce-rapporten-general-domain%3Agood-clinical-practice&sort_by=paddle_publication_date&sort_order=DESC].
</div>


</div>

== Cancer-related Patient Associations and Resources ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Compilation: ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology

'''Primary purpose:''' To translate complex medical language into understandable information for patients.

'''Available guides:''' Side Effects of Immunotherapy and Its Management; AML; Bone Sarcomas; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancers; CML; Stomach Cancer; Soft Tissue Sarcomas.

'''Type of information:''' Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

'''Access to information:''' List of guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-dutch].

== Latest Policymaking Initiatives ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== Report: Belgian Cancer Barometer ===

'''Sponsor, manager or home institution:''' Stichting Tegen Kanker.

'''Primary purpose:''' To create a comprehensive reference work on cancer care in Belgium, providing a global overview and determining priorities for fighting cancer on all fronts, with the collaboration of various organizations and experts in the field.

'''Type of information:''' Number of new cancer diagnoses; Cancer incidence; Most frequent cancers; Cancer mortality, survival and prevalence; People invited, total coverage and response rate according to population survey and region of cancer screenings; Diagnoses, treatment and palliative care general information.

'''Data level:''' National and regional level.

'''Access to information:''' Access Information [https://www.kanker.be/kankerbarometer].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/landenprofiel-voor-kanker-belgie-2023_1700ff9f-nl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Belgium

2023-08-30T15:17:04Z

Akemi: /* Database: AIM-IMA Pharmanet */

== Cancer Centers ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
</div>

== Healthcare System ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

Belgium's healthcare system is a compulsory, social health insurance system. It operates under a model that combines both public and private sectors, with a blend of universal coverage and income-based premiums.

The system is managed by the Ministry of Health at the national level, composed of the Federal Public Service for Health, Food Chain Safety, and Environment, and by regional governments in Flanders, Wallonia, and Brussels-Capital. Health insurance funds, known as "mutualities," are responsible for the management of the social health insurance system.

The Belgian population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, mental health services, dental care, maternity care, rehabilitation services, and prescription medications. Preventive care and health promotion services are also provided. There is no gatekeeping system in place.

All Belgian residents are required to join a health insurance fund, which is typically linked to their employment or their family's employment. Access to healthcare benefits is granted upon registration with a health insurance fund, and coverage extends to dependents as well. The system is funded by income-based contributions from employees, employers, and the government, ensuring comprehensive coverage for all citizens.

Belgium has implemented a nationwide electronic health record (EHR) system called eHealth. This platform securely centralizes patients' medical records, allowing healthcare providers to access and update relevant information. Data from insurance claims, registries, and other sources is also collected and stored in the eHealth system, which aims to improve the overall efficiency and quality of care while maintaining patient privacy.
</div>

== Administrative or Claims Data ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: AIM-IMA Healthcare Data ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed health care services provided to members of Belgium's seven health insurance funds under compulsory health insurance.

'''Type of information:''' [[Data Dictionary: AIM-IMA Healthcare Data]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Gz].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' October 2005 onwards.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Pharmanet ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed drugs and medical devices dispensed in Belgian public pharmacies for members of the seven health insurance funds.

'''Type of information:''' [[Data Dictionary: AIM-IMA Pharmanet]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Fu].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' 2004 onwards.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Échantillon Permantent(e) Steekproef (EPS) ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To provide a longitudinal compilation of administrative health insurance data for federal and regional partners in Belgium.

'''Type of information:''' In the EPS database are all the variables available in the Population, Healthcare, Pharmanet and Hospitalizations databases [https://metadata.ima-aim.be/fr/app/bdds/Ps].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 285,000 policyholders and 56,000 policyholders aged 65 and above.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].
</div>

== Registries ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: Belgian Cancer Registry ===

'''Sponsor, manager or home institution:''' Belgian Cancer Registry.

'''Primary purpose:''' To collect and provide information about cancer in the country

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Cancer incidence, sex, age-specific, age group, year, tumour type and region [https://kankerregister.org/default.aspx?PageId=642].

'''Source of Information:''' Healthcare facilities that have oncology care programs and provide services for pathological anatomy are required by law to collaborate with cancer registration.

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' Head and neck (C00-C14, C30-C32); Oesophagus (C15); Stomach (C16); Colon and rectum (C18-C20); Liver, galbladder and bile ducts (C22-C24); Pancreas (C25); Lung (C34); Bone (C40-C41); Malignant melanoma (C43); Breast (C50); Cervix uteri (C53); Corpus uteri (C54); Ovary (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Meninges, brain and central nervous system (C70-C72); Thyroid (C73); Hodgkin lymphoma (C81); Non-Hodgkin lymphoma (C82-C86); Myeloma (C90); Leukaemia (C91-C95); Myelodysplastic syndromes – Myeloproliferative disorders (MDS-MPD); Invasive tumours (excl. non-melanoma) (C00-C43, C45-C97).

'''Open data access:''' Partially publicly available [https://kankerregister.org/default.aspx?PageId=642]. Instructions to request data for restricted content [https://kankerregister.org/Requesting%20specific%20data].

'''Information/Contact for data request:''' Contact information [https://kankerregister.org/default.aspx?PageId=614].

=== Database: StatBel Cause of Death Registry ===

'''Sponsor, manager or home institution:''' Statistics Belgium.

'''Primary purpose:''' To compile statistics on causes of death in Belgium using statistical declaration-of-death forms and WHO's ICD-10 coding.

'''Type of information:''' Cause of death and number of deaths, month, year, age group, sex, and region [https://statbel.fgov.be/en/open-data/causes-death-month-sex-age-group-and-region]. Further sociodemographic and medical information is available on request, both for citizens in aggregated form and for scientific research in the form of microdata.

'''Source of Information:''' Statistical declaration-of-death forms (Model IIIC and Model IIID) that are filled out by a certifying physician and completed by the municipal administration of the place of death for every death that occurs in Belgium, which are then forwarded to the Communities and aggregated by AD Statistics to compile the statistics at the federal level. In addition to the death registration forms, the data are supplemented by information on deaths registered in the RNPP (National Population Register). See documentation [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#documents].

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1998 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#figures]. Instructions to request data for restricted content [https://statbel.fgov.be/en/about-statbel/what-we-do/microdata-research].

'''Information/Contact for data request:''' Contact information [https://statbel.fgov.be/en/contact].

== Clinical Practices Guidelines ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== KCE Guidelines ===
'''Sponsor, manager or home institution:''' Federaal Kenniscentrum voor de Gezondheidszorg.

'''Primary purpose:''' Provides evidence-based recommendations for management, diagnosing, treating, and following up of many types of cancer.

'''Type of information:''' Guidelines information about management and quality of life of cancer patients, diagnoses, treatment and follow up of many types of cancers, such as breast cancer, renal cancer, ovarian cancer, bladder cancer, etc.

'''Access to information:''' List of guidelines [https://kce.fgov.be/en/publications/all-reports-0?f%5B0%5D=alle-kce-rapporten-general-domain%3Agood-clinical-practice&sort_by=paddle_publication_date&sort_order=DESC].
</div>


</div>

== Cancer-related Patient Associations and Resources ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Compilation: ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology

'''Primary purpose:''' To translate complex medical language into understandable information for patients.

'''Available guides:''' Side Effects of Immunotherapy and Its Management; AML; Bone Sarcomas; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancers; CML; Stomach Cancer; Soft Tissue Sarcomas.

'''Type of information:''' Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

'''Access to information:''' List of guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-dutch].

== Latest Policymaking Initiatives ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== Report: Belgian Cancer Barometer ===

'''Sponsor, manager or home institution:''' Stichting Tegen Kanker.

'''Primary purpose:''' To create a comprehensive reference work on cancer care in Belgium, providing a global overview and determining priorities for fighting cancer on all fronts, with the collaboration of various organizations and experts in the field.

'''Type of information:''' Number of new cancer diagnoses; Cancer incidence; Most frequent cancers; Cancer mortality, survival and prevalence; People invited, total coverage and response rate according to population survey and region of cancer screenings; Diagnoses, treatment and palliative care general information.

'''Data level:''' National and regional level.

'''Access to information:''' Access Information [https://www.kanker.be/kankerbarometer].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/landenprofiel-voor-kanker-belgie-2023_1700ff9f-nl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Belgium

2023-08-30T15:16:34Z

Akemi: /* Database: AIM-IMA Healthcare Data */

== Cancer Centers ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
</div>

== Healthcare System ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

Belgium's healthcare system is a compulsory, social health insurance system. It operates under a model that combines both public and private sectors, with a blend of universal coverage and income-based premiums.

The system is managed by the Ministry of Health at the national level, composed of the Federal Public Service for Health, Food Chain Safety, and Environment, and by regional governments in Flanders, Wallonia, and Brussels-Capital. Health insurance funds, known as "mutualities," are responsible for the management of the social health insurance system.

The Belgian population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, mental health services, dental care, maternity care, rehabilitation services, and prescription medications. Preventive care and health promotion services are also provided. There is no gatekeeping system in place.

All Belgian residents are required to join a health insurance fund, which is typically linked to their employment or their family's employment. Access to healthcare benefits is granted upon registration with a health insurance fund, and coverage extends to dependents as well. The system is funded by income-based contributions from employees, employers, and the government, ensuring comprehensive coverage for all citizens.

Belgium has implemented a nationwide electronic health record (EHR) system called eHealth. This platform securely centralizes patients' medical records, allowing healthcare providers to access and update relevant information. Data from insurance claims, registries, and other sources is also collected and stored in the eHealth system, which aims to improve the overall efficiency and quality of care while maintaining patient privacy.
</div>

== Administrative or Claims Data ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: AIM-IMA Healthcare Data ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed health care services provided to members of Belgium's seven health insurance funds under compulsory health insurance.

'''Type of information:''' [[Data Dictionary: AIM-IMA Healthcare Data]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Gz].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' October 2005 onwards.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Pharmanet ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed drugs and medical devices dispensed in Belgian public pharmacies for members of the seven health insurance funds.

'''Type of information:''' [[Data Dictionary: AIM-IMA Pharmanet]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Fu].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Échantillon Permantent(e) Steekproef (EPS) ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To provide a longitudinal compilation of administrative health insurance data for federal and regional partners in Belgium.

'''Type of information:''' In the EPS database are all the variables available in the Population, Healthcare, Pharmanet and Hospitalizations databases [https://metadata.ima-aim.be/fr/app/bdds/Ps].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 285,000 policyholders and 56,000 policyholders aged 65 and above.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].
</div>

== Registries ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: Belgian Cancer Registry ===

'''Sponsor, manager or home institution:''' Belgian Cancer Registry.

'''Primary purpose:''' To collect and provide information about cancer in the country

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Cancer incidence, sex, age-specific, age group, year, tumour type and region [https://kankerregister.org/default.aspx?PageId=642].

'''Source of Information:''' Healthcare facilities that have oncology care programs and provide services for pathological anatomy are required by law to collaborate with cancer registration.

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' Head and neck (C00-C14, C30-C32); Oesophagus (C15); Stomach (C16); Colon and rectum (C18-C20); Liver, galbladder and bile ducts (C22-C24); Pancreas (C25); Lung (C34); Bone (C40-C41); Malignant melanoma (C43); Breast (C50); Cervix uteri (C53); Corpus uteri (C54); Ovary (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Meninges, brain and central nervous system (C70-C72); Thyroid (C73); Hodgkin lymphoma (C81); Non-Hodgkin lymphoma (C82-C86); Myeloma (C90); Leukaemia (C91-C95); Myelodysplastic syndromes – Myeloproliferative disorders (MDS-MPD); Invasive tumours (excl. non-melanoma) (C00-C43, C45-C97).

'''Open data access:''' Partially publicly available [https://kankerregister.org/default.aspx?PageId=642]. Instructions to request data for restricted content [https://kankerregister.org/Requesting%20specific%20data].

'''Information/Contact for data request:''' Contact information [https://kankerregister.org/default.aspx?PageId=614].

=== Database: StatBel Cause of Death Registry ===

'''Sponsor, manager or home institution:''' Statistics Belgium.

'''Primary purpose:''' To compile statistics on causes of death in Belgium using statistical declaration-of-death forms and WHO's ICD-10 coding.

'''Type of information:''' Cause of death and number of deaths, month, year, age group, sex, and region [https://statbel.fgov.be/en/open-data/causes-death-month-sex-age-group-and-region]. Further sociodemographic and medical information is available on request, both for citizens in aggregated form and for scientific research in the form of microdata.

'''Source of Information:''' Statistical declaration-of-death forms (Model IIIC and Model IIID) that are filled out by a certifying physician and completed by the municipal administration of the place of death for every death that occurs in Belgium, which are then forwarded to the Communities and aggregated by AD Statistics to compile the statistics at the federal level. In addition to the death registration forms, the data are supplemented by information on deaths registered in the RNPP (National Population Register). See documentation [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#documents].

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1998 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#figures]. Instructions to request data for restricted content [https://statbel.fgov.be/en/about-statbel/what-we-do/microdata-research].

'''Information/Contact for data request:''' Contact information [https://statbel.fgov.be/en/contact].

== Clinical Practices Guidelines ==
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=== KCE Guidelines ===
'''Sponsor, manager or home institution:''' Federaal Kenniscentrum voor de Gezondheidszorg.

'''Primary purpose:''' Provides evidence-based recommendations for management, diagnosing, treating, and following up of many types of cancer.

'''Type of information:''' Guidelines information about management and quality of life of cancer patients, diagnoses, treatment and follow up of many types of cancers, such as breast cancer, renal cancer, ovarian cancer, bladder cancer, etc.

'''Access to information:''' List of guidelines [https://kce.fgov.be/en/publications/all-reports-0?f%5B0%5D=alle-kce-rapporten-general-domain%3Agood-clinical-practice&sort_by=paddle_publication_date&sort_order=DESC].
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</div>

== Cancer-related Patient Associations and Resources ==
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=== Compilation: ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology

'''Primary purpose:''' To translate complex medical language into understandable information for patients.

'''Available guides:''' Side Effects of Immunotherapy and Its Management; AML; Bone Sarcomas; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancers; CML; Stomach Cancer; Soft Tissue Sarcomas.

'''Type of information:''' Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

'''Access to information:''' List of guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-dutch].

== Latest Policymaking Initiatives ==
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=== Report: Belgian Cancer Barometer ===

'''Sponsor, manager or home institution:''' Stichting Tegen Kanker.

'''Primary purpose:''' To create a comprehensive reference work on cancer care in Belgium, providing a global overview and determining priorities for fighting cancer on all fronts, with the collaboration of various organizations and experts in the field.

'''Type of information:''' Number of new cancer diagnoses; Cancer incidence; Most frequent cancers; Cancer mortality, survival and prevalence; People invited, total coverage and response rate according to population survey and region of cancer screenings; Diagnoses, treatment and palliative care general information.

'''Data level:''' National and regional level.

'''Access to information:''' Access Information [https://www.kanker.be/kankerbarometer].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/landenprofiel-voor-kanker-belgie-2023_1700ff9f-nl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Slovenia

2023-08-30T13:25:44Z

Akemi: /* Database: Programme Svit Colorectal Cancer Screening */

== Cancer Centers ==
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</div>

== Healthcare System ==
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Slovenia uses a universal healthcare system, which is primarily funded through the Health Insurance Institute of Slovenia (Zavod za zdravstveno zavarovanje Slovenije or ZZZS). The system provides comprehensive and compulsory health insurance coverage to all citizens and residents, with opting out not allowed.

The healthcare system is managed at the national level by the Ministry of Health, while the Health Insurance Institute of Slovenia (ZZZS) is responsible for administering the health insurance fund. There are also regional healthcare providers and institutions that operate under the guidance of the national framework. Municipalities have a role in overseeing the organization and provision of primary care, albeit limited in decision-making.

The population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, dental care, maternity care, mental health services, preventive care, and prescription medications. Some services may require co-payments, but the majority of the costs are covered by the national health insurance fund. About 95% of the population purchases complementary Voluntary Health Insurance (VHI) mainly to cover co-payments.

To access the benefits of the healthcare system, individuals must be insured under the ZZZS. This insurance is mandatory for all citizens and residents, and it is typically provided through employment. Unemployed individuals, students, retirees, and other vulnerable groups are also insured through various social programs or via their family members' insurance.

In Slovenia, claims data, registries, and electronic health records are maintained and recorded using a combination of digital systems and traditional methods. The National Institute of Public Health (NIJZ) manages the national health registries, which include data on births, deaths, diseases, and treatments. Electronic health records are increasingly being adopted, with the eHealth project aiming to improve and integrate health information systems to facilitate better care coordination and information sharing among healthcare providers. GPs act as gatekeepers for accessing specialized care, and long waiting times for some specialist services persist.
</div>

== Administrative or Claims Data ==
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=== Database: SiStat Death ===

'''Sponsor, manager or home institution:''' Statistični urad RS; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide data on deaths and natural population trends for the formulation of appropriate demographic, social, health and other policies at national and subnational levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Available type of information:''' Number of deaths; Sex; Age; Number of deaths per 1,000 population; Average age of deaths; Cause of deaths, Life expectancy, and infant deaths per 1,000 live births.

'''Source of Information:''' Surveys. More information can be found in the methodological document [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Unknown.

'''Available date range:''' 2002 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://pxweb.stat.si/SiStat/sl/Podrocja/Index/100/prebivalstvo] under "Population" > "Mortality" > "Cause of Death". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://pxweb.stat.si/SiStatData/pxweb/sl/Data/-/05L3013S.px].

=== Database: NIJZ Sick Leave ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To monitor and analyze the causes and other characteristics of temporary absenteeism.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

'''Available type of information:''' Indicators of the patient population; Year; Gender; Age; Disease groups; Reason for withholding patient population; Economic activities; Health regions and statistical regions.

'''Source of Information:''' Public and private healthcare providers at the primary level (outpatient clinics of selected - personal physicians) report to the regional units of the NIJZ.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1983 onwards.

'''Available date range:''' 2000 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Health status of the population" > "Sick Leave". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

=== Database: NIJZ Outpatient Health (ZUBSTAT) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' The purpose of the out-of-hospital health statistics database (ZUBSTAT) is to monitor, evaluate and
plan curative and preventive health care at the primary and secondary levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Available type of information:''' Number and rate of visits at the primary level; Year; Types of visits; Number and rate of preventive visits; Age group; Gender; Number and rate of curative; Home visits and counseling; Statistical region; Number of corrective visits; Number and rate of diagnosed diseases; Conditions at the primary level; ICD-10; Main diagnoses chapters; Number and rate of visits to specialist outpatient services; Type of medical activity; Number of curative visits in specialist outpatient services and conditions in specialist outpatient services.

'''Source of Information:''' Reported by public and private healthcare providers.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1996 onwards [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Cancer Areas of Interest:''' Neoplasms (C88-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Treatments at primary care level" and "Healthcare" > "Specialized outpatient treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

=== Database: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Monitoring and studying the incidence of diseases, injuries and poisonings that require hospital treatment.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

'''Available type of information:''' Number of hospitalizations due to illness; Gender; Year; Statistical region; Age group; Main diagnoses; ICD-10; Number of first and re-admissions to hospitals; Number of hospitalizations due to injuries and poisoning; Reason for hospital treatment; External cause; Number of deaths; Number of hospitalizations due to accidental injuries and poisoning; Number of hospitalizations due to intentional injuries and poisoning; Number of hospitalizations due to transport accidents with motor vehicles; Type of injury and poisoning; Number of episodes of hospital treatment due to illness, injury and poisoning; Type of treatment; Number of daily hospital treatments due to illnesses, injuries and poisoning; Number of episodes of prolonged hospital treatment due to diseases, injuries and poisoning; Number of episodes of extended hospital treatment due to illness, injury and poisoning; Rate of hospitalizations due to illness (per 1,000 inhabitants); Average duration of hospitalizations due to illness; Average duration of hospitalizations due to illness in days; Percentage of first and re-admissions to hospitals due to illness; Admission type; Proportion of hospitalizations due to illness; Average duration of hospitalization (in days) due to the most common diseases; Rate of hospitalizations (per 1,000 inhabitants) due to injuries and poisoning; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to (un)intentional injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to transport accidents with motor vehicles, suicide and assault and legal intervention; Average duration of hospitalizations (in days) due to injuries and poisonings.

'''Source of Information:''' Reporters are all institutions that perform hospital activities in the Republic of Slovenia.

'''Data level:''' Patient level.

''' Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1965 onwards.

'''Cancer Areas of Interest:''' [[Cancer Areas of Interest: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB)]].

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Hospital treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

=== Database: NIJZ Healthcare Providers ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To serve as a comprehensive national resource for planning, monitoring, and implementing healthcare and health insurance systems, as well as a register for various groups of medical personnel.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Available type of information:''' Year; Age group; Gender; Employees; Professional groups; Statistical regions; Employees according to the list of occupations in the health sector; Type of contractor and legal status; MOH profession; Type of specialization; Specialization status; Indicators of employees in healthcare.

'''Source of Information:''' Providers are registered on the NIJZ, and private providers are managed by the Ministry of Health [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Healthcare Providers". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

=== Database: NIJZ Hospital Beds ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Provide information on hospital beds for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of data:''' Number of hospital beds, Hospital activity; Year; Region; Statistical region of hospitals.

'''Source of Information:''' Report on the work of the inpatient institution.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Hospital Beds". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__3%20Bolni%C5%A1ke%20postelje/Postelje1.px/].

=== Database: NIJZ Medical Devices ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information about medical devices for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6i_MET_POJASNILA_NAPRAVE.pdf].

'''Available type of information:''' Year; Devices in healthcare; Number and rate; Contractor type.

'''Source of Information:''' Administration of the Republic of Slovenia for Radiation Protection; Ministry of Health in cooperation with the Institute for Health Insurance of Slovenia.

'''Data level:''' Hospital level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2004 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Devices in Healthcare". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__2%20Naprave%20v%20zdravstvu/Naprave.px/].

=== Database: ZZZS Number of treatments by healthcare provider ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on treatments provided by healthcare providers for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Days; Months; Year; Contractor; Health worker; Type of medical activity; Subtype of health activity; Number of treatments.

'''Source of Information:''' Unknown.

'''Data level:''' Provider and hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' October, 2022 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_izvedenih_obravnavah_po_zdravstvenem_delavcu/seznam_datotek_4136].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned Number of Teams ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned number of teams by individual providers and medical activities (VZD) for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Year; Name of the activity; Number of teams; Type of ownership; Regional contracting unit; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Type of medical activity; Subtype of health activity; Service code; 4th level of contractual activity; Description of the 4th level of contractual activity; NO. TIMOV.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2013-2020.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_dostopnosti_do_zdravstvenih_storitev/planirano_stevilo_timov/!ut/p/z1/04_Sj9CPykssy0xPLMnMz0vMAfIjo8zivf19DAz9DQwNA3yczA3MLILNPZy9gwzcDc31C7IdFQF0gdKM/].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Health Services ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned and implemented health services for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Activity; Regional contracting unit; Type of ownership; Type of medical activity; Subtype of health activity; Service code; Name of the activity; Plan; Rea; Index; Plan O,P; Rea O,P; Index O,P; ZZZS no. contractor; IVZ no. contractor; Name of the contractor.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital and regional level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available, for data before 2022 [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/ZbirniPlanRealizacija?openview&count=1000] and [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/plan_in_realizacija/podatki_o_planu_in_realizaciji_zdrav_storitve/seznam_datotek#Z7_KOL01O011PO860QNVUM8V00IU0] for data after 2022.

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Imaging Diagnostics for the Detection or Treatment of Cancer ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the imaging diagnostics for the detection or treatment of cancer for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Plan; Rea; Rea for Rak; Index; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Contractor nº.; Regional contracting unit; Type; Subtype; Service.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 and 2019.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/slike?openview&count=1000].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].
</div>

== Registries ==
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=== Database: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Institute of Oncology Ljubljana [https://www.onko-i.si/eng/].

'''Primary purpose:''' To provide comprehensive historical and ongoing data on cancer incidence, prevalence, mortality, and survival in Slovenia, serving as a critical resource for evaluating the effectiveness of cancer prevention, diagnosis, treatment, and care, as well as for planning necessary resources for cancer control.

'''Type of information:''' Definitions of available cancer burden measures in the website [http://www.slora.si/en/definicije-kazalnikov-in-metod].

'''Source of Information:''' Source for incidence and prevalence is the Slovenian Cancer Registry (SCR) [https://www.onko-i.si/eng/crs]. Source for Mortality is the Nacionalni inštitut za javno zdravje (NIJZ) [http://www.nijz.si/].

'''Data level:''' Aggregated level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' N/A.

'''Date Range:''' 1961 onwards.

'''Cancer Areas of Interest:''' All malignant neoplasms and some additional benign and in situ entities.

'''Open data access:''' Partially publicly available [http://www.slora.si/en/]. Reports information [https://www.onko-i.si/eng/crs]. Instructions to request data for restricted content [https://www.onko-i.si/rrs].

'''Information/Contact for data request:''' Contact information [https://www.onko-i.si/eng/crs].

=== Database: The Svit Programme - Colorectal Cancer Screening Programme ===

'''Sponsor, manager or home institution:''' The Svit Programme; National Institute of Public Health.

'''Primary purpose:''' To provide information on the colorectal cancer screenings performed by the Svit Programme in order to support research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Response rate; Gender; Region; Municipalities; Year.

'''Source of Information:''' Information collected by the Svit Programme.

'''Data level:''' Patient level.

'''Available data level:''' Municipal, regional, and national levels.

'''Number of Records:''' Reports with response rate for each year [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa].

'''Date Range:''' 2010 onwards [https://podatki.nijz.si/docs/Metodolo%C5%A1ka_pojasnila_SVIT.pdf].

'''Cancer Areas of Interest:''' Malignant neoplasm of the colon (C18); Malignant neoplasm of the rectosigmoid junction (C19); Malignant neoplasm of the rectum (C20).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Preventive Programs" > "National program for screening and early detection of precancerous changes and colon and rectal cancer (Svit)". Reports information [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa]. Instructions to request data for restricted content [https://podatki.nijz.si/docs/Navodila_za_uporabnike_2022.pdf] in the "Contact section".

'''Information/Contact for data request:''' Contact information [https://www.program-svit.si/] at the end of the page.

=== Database: DORA Breast Cancer Screening Registry ===

'''Sponsor, manager or home institution:''' DORA Programme; Institute of Oncology Ljubljana, Slovenia.

'''Primary purpose:''' To provide information on the breast screenings performed by the DORA Program in order to support research and policymaking.

'''Type of information:''' There is no data dictionary available.

'''Available type of information:''' Regional unit; Year; Age group; Screening round number; Number of women pictured; Number of women invited to mammography; Participation in the DORA program; Conference consensus; Number of women on additional treatments; Number of breast cancers detected; Number of screening centers in operation; Proportion of invited women who attended screening mammography; Proportion of women attending follow-up; Proportion of invasive cancers; Breast cancer detection rate (per 1,000 women screened); Screening-detected invasive cancers with negative lymph nodes; Proportion in screening of detected cancers that are stage II or higher; Proportion of detected invasive cancers that are <= 10 mm in the first round of screening; Proportion of invasive cancers < 15 mm detected in screening; Time interval between screening imaging and screening mammography result time; Interval between preoperative conference and date for surgery.

'''Source of Information:''' Information collected by the DORA Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://dora.onko-i.si/dokumenti].

'''Date Range:''' 2008 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of breast (C50) and noninvasive cancer (D05).

'''Open data access:''' Partially publicly available [https://dora.onko-i.si/dokumenti]. Instructions to request data for restricted content [https://dora.onko-i.si/dokumenti] in "More Information".

'''Information/Contact for data request:''' Contact information [https://dora.onko-i.si/dokumenti] at the end of the page.

=== Database: Cervical Cancer Screening Registry ZORA ===

'''Sponsor, manager or home institution:''' ZORA Programme; Institute of Oncology Ljubljana, Slovenia.

'''Primary purpose:''' To reduce morbidity and mortality from cervical cancer in Slovenia.

'''Type of information:''' There is no data dictionary available.

'''Available type of information:''' Data on monitoring and evaluation: 3-year examination coverage by: year, age group, territorial unit, no. of examined women, no. of women with permanent residence, and transparency; Citology results: number of all screening smears satisfactory for evaluation and screening results stratified by calendar years; HPV triage test: number of all HPV triage test by calendar years and indication for the test; Histopatology: number of all invasive procedures on cervix by calendar years, procedure and histopathology results; High-grade cervical lesions: population data, no. of women with newly diagnosed HSIL/CIN2+ by calendar years and age groups; and Cervical cancer: incidence (data from Slovenian Cancer Registry).

'''Source of Information:''' Information collected by the ZORA Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://zora.onko-i.si/publikacije/letna-porocila].

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of cervix uteri (C53); Carcinoma in situ of cervix uteri (D06).

'''Open data access:''' It is not possible for researchers to access the ZORA programme database directly. It is possible to receive the data from the ZORA registry on request in accordance with their protocol for screening data access. Publicly available data [https://zora.onko-i.si/publikacije/kazalniki] and [https://zora.onko-i.si/en/monitoring-and-evaluation]. Reports information [https://zora.onko-i.si/publikacije/letna-porocila]. Instructions to request data for restricted content [https://zora.onko-i.si/program-zora/register-zora].

'''Information/Contact for data request:''' Contact information [https://zora.onko-i.si/pomozne-strani/kontakt].

== Clinical Practices Guidelines ==
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=== Onko Guidelines ===

'''Sponsor, manager or home institution:''' Onkološki inštitut Ljubljana.

'''Primary purpose:''' To provide practical recommendations and improve the development, organization, and clinical practices on cancer.

'''Type of information:''' Recommendations care, treatments, palliative care, prevention, diagnoses, quality of life, follow up of various types of cancer.

'''Access to information:''' List of guidelines [https://www.onko-i.si/priporocila].
</div>

</div>

== Cancer-related Patient Associations and Resources ==
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=== Non-governmental organizations ===

'''Sponsor, manager or home institution:''' Various oncology institutions and societies in Slovenia.

'''Primary purpose:''' To support and empower cancer patients, raise awareness about cancer prevention and treatment, provide education and resources, advocate for patients' rights, improve the quality of life for those affected by cancer, and promote collaboration between various stakeholders in the field of oncology.

'''Access to information:''' Information [https://www.onko-i.si/za_javnost_in_bolnike/nevladne_organizacije].

=== ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology (ESMO).

'''Primary purpose:''' Provide patients, their relatives and caregivers guides to better understand complex medical information about different types of cancer.

'''Available guides:''' Cancer Treatment During the COVID-19 Pandemic; Side Effects Associated with Immunotherapy and Their Management; Personalized Medicine in Oncology; Life with Cancer; Breast Cancer; Ovarian Cancer; Cervical Cancer.

'''Type of information:''' Laymen-directed descriptions of specific cancers, their causes, diagnoses, treatment, screening, and side effects, among other relevant information for patients, their relatives and caregivers.

'''Access to information:''' Patient Guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-croatian].

== Latest Policymaking Initiatives ==
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=== Reports: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Register raka Republike Slovenije.

'''Primary purpose:''' To collect and process data on cancer incidence and patients' survival, being one of the oldest population-based cancer registries in Europe, and a member of the International Association of Cancer Registries and the European Network of Cancer Registries.

'''Type of information:''' The most common cancers; Cancer survive; Cancer incidence; Cancer prevalence and mortality; Number and proportions of patients who were operated on, treated with systemic treatment or irradiated; Number of patients who fell ill in and underwent surgery; Number of patients who received systemic treatment or therapy.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://www.onko-i.si/eng/crs].

=== Reports: ZORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; ZORA Program.

'''Primary purpose:''' To actively screen and reduce morbidity and mortality from cervical cancer in Slovenia, aiming for at least 70% coverage of women aged 20-64 through regular cervical smear examinations every three years.

'''Type of information:''' The percentage of women in the target group who are screened according to the program guidelines (screening); The number of new patients in a given year; (RMV incidence rate); Mortality due to RMV; The ratio between the number of newly detected precancerous and cancerous changes per year.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://zora.onko-i.si/publikacije/letna-porocila].

=== Reports: DORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; DORA Program.

'''Primary purpose:''' The early detection of breast cancer among women aged 50 to 69 in Slovenia, aiming to reduce breast cancer mortality by 25 to 30 percent through regular screening mammography and informed participation.

'''Type of information:''' Coverage and participation of the DORA Program; Number of breast screenings; Cancers detected in the screening program.

'''Data level:''' National level.

'''Access to information:''' Access Information > To access annual reports, go to DORA program reports [https://dora.onko-i.si/dokumenti].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/profil-drzav-o-stanju-na-podrocju-raka-slovenija-2023_fd31a438-sl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Croatia

2023-08-30T13:18:44Z

Akemi: /* Database: Croatian National Cancer Registry */

== Cancer Centers ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">


</div>

== Healthcare System ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

Croatia operates under a universal healthcare system, which provides comprehensive health coverage to all its citizens. It is primarily financed through mandatory health insurance contributions, with additional funding from the state budget.

The Croatian healthcare system is managed by the Croatian Health Insurance Fund (CHIF), a public organization responsible for financing healthcare services. The Ministry of Health oversees the healthcare system at the national level and sets policy, while regional management is delegated to the 21 County Health Departments (CHDs).

The population of Croatia receives a wide range of healthcare benefits through the system, including primary care, specialist care, inpatient and outpatient hospital care, dental care, mental health care, rehabilitation services, prescription medications, and emergency medical services. Preventive care, such as vaccinations and screenings, is also covered.

All Croatian citizens and residents are eligible for healthcare benefits, provided they have registered with the CHIF and are up-to-date with their mandatory health insurance contributions. Foreign nationals residing in Croatia may also access the healthcare system if they have the appropriate documentation and insurance coverage.

The National Public Health Information System of the Croatian Institute of Public Health (CIPH) collects data for various registries, including a cancer registry. The Central Health Information System (CEZIH), on the other hand, is managed by CHIF and is used to share standardized health data to support delivery of primary, secondary and tertiary healthcare [https://eurohealthobservatory.who.int/countries/croatia/].

Croatia has implemented an electronic health record system (EHR) to improve the efficiency and quality of healthcare services. Healthcare providers are required to use the EHR system to record and share patients' medical information, including diagnoses, treatments, and prescriptions. The CHIF maintains a centralized database of claims data and registries, allowing for effective monitoring of healthcare expenditures, utilization, and quality. This data is used for planning, policy development, and evaluation purposes.
</div>

== Administrative or Claims Data ==
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=== Database: Central Health Information System ===

'''Sponsor, manager or home institution:''' Croatian Health Insurance Fund.

'''Type of information:''' The content of the complete dataset was not found.

'''Available type of information''': Procedures grouper including tables with all categories of procedures, casemix, admission justification, main diagnosis, as well as different sortings such as frequency by category of hospital, by complexity, etc.

'''Source of information:''' Data is acquired from all healthcare providers in Croatia [https://narodne-novine.nn.hr/clanci/sluzbeni/full/2019_02_14_269.html].

'''Data level:''' Patient level.

'''Available data level:''' Hospital level.

'''Number of records:''' Unknown.

'''Date range:''' Unknown.

'''Available date range:''' 2010 onwards.

'''Data access:''' Partially publicly available [http://www.cezih.hr/dts_rezultati_i_novosti.html].

'''Information/Contact for data request:''' Unknown.
</div>

== Registries ==
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=== Database: Croatian National Cancer Registry ===

'''Primary purpose:''' Register new cancer cases and provide data on incidence, prevalence, and survival in Croatia.

'''Sponsor, manager or home institution:''' Croatian Institute of Public Health.

'''Type of information:''' For patients: sex, date of birth, age at diagnosis, place of residence, vital status, date of death. For tumors: date of cancer diagnosis, cancer diagnosis (ICD-10 and ICD-O-3), basis of diagnosis, morphological diagnosis (ICD-O-3), stage at diagnosis, grade.

'''Source of Information:''' Hospital report forms, primary care report forms, pathology and cytology reports, and death certificates. Additional data sources include hospital discharge diagnoses and outpatient visit diagnoses.

'''Data level:''' Patient level.

'''Number of Records:''' >500,000 cancer incidence diagnoses (since 2001).

'''Date Range:''' 1959 onwards [https://ghdx.healthdata.org/organizations/croatian-national-cancer-registry].

'''Cancer Areas of Interest:''' All cancers except non-melanoma skin cancer (C44), including carcinoma in situ and benign and borderline CNS tumors.

'''Data access:''' Partially publicly available [https://www.hzjz.hr/sluzba-epidemiologija-prevencija-nezaraznih-bolesti/publikacije-odjel-za-maligne-bolesti/]. Instructions to request data for restricted content [https://www.hzjz.hr/sluzba-epidemiologija-prevencija-nezaraznih-bolesti/odjel-za-maligne-bolesti/].

'''Information/Contact for data request:''' Contact information [https://www.hzjz.hr/sluzba-epidemiologija-prevencija-nezaraznih-bolesti/odjel-za-maligne-bolesti/].

=== Database: Medicinal Products ===

'''Primary purpose:''' List all medicinal products with marketing authorization granted by HALMED and the European Medicines Agency (EMA).

'''Sponsor, manager, or home institution:''' Agency for Medicinal Products and Medical Devices (HALMED)

'''Available information:''' Medicine name, marketing authorization number, active substance, pharmaceutical form, manufacturer, marketing authorization holder, marketing authorization date, MA period of validity, classification number, registration number, composition, prescription, type of prescription, distribution, advertising to the general public, ATC code and medicinal product marketed in Croatia.

'''Data access:''' Partially publicly available [https://www.halmed.hr/en/Lijekovi/Baza-lijekova/].





== Clinical Practices Guidelines ==

=== Compilation: Croatian Medical Association Publications ===

'''Sponsor, manager or home institution:''' Croatian Medical Association.

'''Primary purpose:''' Offer free access to clinical guidelines and other publications about cancer and other subjects.

'''Type of information:''' Clinical guidelines for diagnosis, treatment and/or follow-up of multiple cancer types such as breast, cervical, ovarian, abdominal, lung, prostate, kidney, bladder, testicular, among others.

'''Access to information:''' Query for cancer-related publications [https://lijecnicki-vjesnik.hlz.hr/rezultati-pretrazivanja/?wpv_view_count=2198&wpv_post_search=rak&wpv-wpcf-autori=&wpv-godina=0&wpv-rubrika=0].

=== Guideline: Guidelines for the treatment of cancer pain in adults ===

'''Sponsor, manager or home institution:''' Croatian Medical Association.

'''Primary purpose:''' Offer guidelines on how to treat adults with cancer in pain.

'''Type of information:''' Information on anamnesis and assessment of pain, pain scales, drug effects on pain, palliative care, among other information.

'''Access to information:''' List of guidelines [https://www.hlz.hr/download/smjernice-za-lijecenje-karcinomske-boli-odraslih/].

=== Guideline: Clinical guidelines for the oncoplastic treatment of breast cancer ===

'''Sponsor, manager or home institution:''' Croatian Medical Association.

'''Primary purpose:''' Offer guidelines for oncoplastic breast cancer treatment.

'''Type of information:''' Offer epidemiology data, explanations on preventative examinations, invasive diagnostic methods, describe the psychological element of the treatment, and how the treatment itself should be conducted.

'''Access to information:''' List of guidelines [https://www.hlz.hr/download/klinicke-smjernice-za-onkoplasticno-lijecenje-raka-dojke/].

=== HDGO Guidelines ===
'''Sponsor, manager or home institution:''' Hrvatskog Društva za Ginekologiju i Opstetriciju.

'''Primary purpose:''' To improve the quality of healthcare for gynecological cancer patients by standardizing, unifying, and optimizing diagnostics, treatment, and follow-up procedures.

'''Type of information:''' Diagnosis, treatments and follow-up of gynecological cancers.

'''Access to information:''' List of guidelines [https://www.hdgo.hr/Default.aspx?sifraStranica=902].
</div>

== Latest Policymaking Initiatives ==
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=== Policy: National Cancer Control Plan 2020-2030 ===

'''Sponsor, manager or home institution:''' Ministry of Health; all other organizations participating in the plan.

'''Primary purpose:''' Improve cancer care at all levels, including primary, secondary and tertiary prevention, diagnosis, treatment, palliative care, research, education, and data recording.

'''Type of information:''' Detailed plans for all goals above, including objectives, resources, stakeholders, economic evaluations and key references.

''''Level:''' National level.

'''Access to information:''' Contact information [https://narodne-novine.nn.hr/clanci/sluzbeni/2020_12_141_2728.html]. English version [https://www.iccp-portal.org/system/files/plans/NPPR_ENG_final.pdf].

=== Report: Breast Cancer Screenings and Diagnoses ===

'''Sponsor, manager or home institution:''' Nacionalni Program Ranog Otkrivanja Raka Dojke.

'''Primary purpose:''' To recommend and implement a mammographic screening program for women aged 50 to 69 years to reduce breast cancer morbidity and mortality while ensuring quality and accessibility of services.

'''Type of information:''' Breast cancer incidence and mortality; Incidance rate; General data on screening program implementation, quality control, and early detection and diagnosis of breast cancer.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://www.hzjz.hr/wp-content/uploads/2017/10/HR-smjernice_Rak-dojke.pdf].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/pregled-trendova-i-stanja-zdravstvene-skrbi-u-podrucju-raka-po-zemljama-hrvatska-2023_64eeb85a-hr].
</div>

== Cancer-related Patient Associations and Resources ==
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=== Screening: National Breast Cancer Early Detection Program ===

'''Primary Purpose:''' To reduce mortality from breast cancer by 15-25%, to detect breast cancer in the initial stage in the highest possible percentage, and to improve the quality of life of breast cancer patients.

'''Level:''' National level.

'''Information/Contact:''' Contact information [https://www.hzjz.hr/sluzba-epidemiologija-prevencija-nezaraznih-bolesti/odjel-za-programe-probira-raka-dojke/].

=== Resource: ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology (ESMO)

'''Primary purpose:''' Provide patients, their relatives and caregivers guides to better understand complex medical information about different types of cancer.

'''Available guides:''' Cancer Treatment During the COVID-19 Pandemic; Side Effects Associated with Immunotherapy and Their Management; Personalized Medicine in Oncology; Life with Cancer; Breast Cancer; Ovarian Cancer; Cervical Cancer.

'''Type of information:''' Laymen-directed descriptions of specific cancers, their causes, diagnoses, treatment, screening, and side effects, among other relevant information for patients, their relatives and caregivers.

'''Access to information:''' Patient Guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-croatian].

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Croatia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Croatia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].

</div>

Belgium

2023-08-29T15:06:05Z

Akemi: /* Database: StatBel Cause of Death Registry */

== Cancer Centers ==
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</div>

== Healthcare System ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

Belgium's healthcare system is a compulsory, social health insurance system. It operates under a model that combines both public and private sectors, with a blend of universal coverage and income-based premiums.

The system is managed by the Ministry of Health at the national level, composed of the Federal Public Service for Health, Food Chain Safety, and Environment, and by regional governments in Flanders, Wallonia, and Brussels-Capital. Health insurance funds, known as "mutualities," are responsible for the management of the social health insurance system.

The Belgian population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, mental health services, dental care, maternity care, rehabilitation services, and prescription medications. Preventive care and health promotion services are also provided. There is no gatekeeping system in place.

All Belgian residents are required to join a health insurance fund, which is typically linked to their employment or their family's employment. Access to healthcare benefits is granted upon registration with a health insurance fund, and coverage extends to dependents as well. The system is funded by income-based contributions from employees, employers, and the government, ensuring comprehensive coverage for all citizens.

Belgium has implemented a nationwide electronic health record (EHR) system called eHealth. This platform securely centralizes patients' medical records, allowing healthcare providers to access and update relevant information. Data from insurance claims, registries, and other sources is also collected and stored in the eHealth system, which aims to improve the overall efficiency and quality of care while maintaining patient privacy.
</div>

== Administrative or Claims Data ==
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=== Database: AIM-IMA Healthcare Data ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on health care services provided to members of Belgium's seven health insurance funds under compulsory health insurance.

'''Type of information:''' [[Data Dictionary: AIM-IMA Healthcare Data]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Gz].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Pharmanet ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed drugs and medical devices dispensed in Belgian public pharmacies for members of the seven health insurance funds.

'''Type of information:''' [[Data Dictionary: AIM-IMA Pharmanet]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Fu].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Échantillon Permantent(e) Steekproef (EPS) ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To provide a longitudinal compilation of administrative health insurance data for federal and regional partners in Belgium.

'''Type of information:''' In the EPS database are all the variables available in the Population, Healthcare, Pharmanet and Hospitalizations databases [https://metadata.ima-aim.be/fr/app/bdds/Ps].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 285,000 policyholders and 56,000 policyholders aged 65 and above.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].
</div>

== Registries ==
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=== Database: Belgian Cancer Registry ===

'''Sponsor, manager or home institution:''' Belgian Cancer Registry.

'''Primary purpose:''' To collect and provide information about cancer in the country

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Cancer incidence, sex, age-specific, age group, year, tumour type and region [https://kankerregister.org/default.aspx?PageId=642].

'''Source of Information:''' Healthcare facilities that have oncology care programs and provide services for pathological anatomy are required by law to collaborate with cancer registration.

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' Head and neck (C00-C14, C30-C32); Oesophagus (C15); Stomach (C16); Colon and rectum (C18-C20); Liver, galbladder and bile ducts (C22-C24); Pancreas (C25); Lung (C34); Bone (C40-C41); Malignant melanoma (C43); Breast (C50); Cervix uteri (C53); Corpus uteri (C54); Ovary (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Meninges, brain and central nervous system (C70-C72); Thyroid (C73); Hodgkin lymphoma (C81); Non-Hodgkin lymphoma (C82-C86); Myeloma (C90); Leukaemia (C91-C95); Myelodysplastic syndromes – Myeloproliferative disorders (MDS-MPD); Invasive tumours (excl. non-melanoma) (C00-C43, C45-C97).

'''Open data access:''' Partially publicly available [https://kankerregister.org/default.aspx?PageId=642]. Instructions to request data for restricted content [https://kankerregister.org/Requesting%20specific%20data].

'''Information/Contact for data request:''' Contact information [https://kankerregister.org/default.aspx?PageId=614].

=== Database: StatBel Cause of Death Registry ===

'''Sponsor, manager or home institution:''' Statistics Belgium.

'''Primary purpose:''' To compile statistics on causes of death in Belgium using statistical declaration-of-death forms and WHO's ICD-10 coding.

'''Type of information:''' Cause of death and number of deaths, month, year, age group, sex, and region [https://statbel.fgov.be/en/open-data/causes-death-month-sex-age-group-and-region]. Further sociodemographic and medical information is available on request, both for citizens in aggregated form and for scientific research in the form of microdata.

'''Source of Information:''' Statistical declaration-of-death forms (Model IIIC and Model IIID) that are filled out by a certifying physician and completed by the municipal administration of the place of death for every death that occurs in Belgium, which are then forwarded to the Communities and aggregated by AD Statistics to compile the statistics at the federal level. In addition to the death registration forms, the data are supplemented by information on deaths registered in the RNPP (National Population Register). See documentation [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#documents].

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1998 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#figures]. Instructions to request data for restricted content [https://statbel.fgov.be/en/about-statbel/what-we-do/microdata-research].

'''Information/Contact for data request:''' Contact information [https://statbel.fgov.be/en/contact].

== Clinical Practices Guidelines ==
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=== KCE Guidelines ===
'''Sponsor, manager or home institution:''' Federaal Kenniscentrum voor de Gezondheidszorg.

'''Primary purpose:''' Provides evidence-based recommendations for management, diagnosing, treating, and following up of many types of cancer.

'''Type of information:''' Guidelines information about management and quality of life of cancer patients, diagnoses, treatment and follow up of many types of cancers, such as breast cancer, renal cancer, ovarian cancer, bladder cancer, etc.

'''Access to information:''' List of guidelines [https://kce.fgov.be/en/publications/all-reports-0?f%5B0%5D=alle-kce-rapporten-general-domain%3Agood-clinical-practice&sort_by=paddle_publication_date&sort_order=DESC].
</div>


</div>

== Cancer-related Patient Associations and Resources ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Compilation: ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology

'''Primary purpose:''' To translate complex medical language into understandable information for patients.

'''Available guides:''' Side Effects of Immunotherapy and Its Management; AML; Bone Sarcomas; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancers; CML; Stomach Cancer; Soft Tissue Sarcomas.

'''Type of information:''' Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

'''Access to information:''' List of guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-dutch].

== Latest Policymaking Initiatives ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== Report: Belgian Cancer Barometer ===

'''Sponsor, manager or home institution:''' Stichting Tegen Kanker.

'''Primary purpose:''' To create a comprehensive reference work on cancer care in Belgium, providing a global overview and determining priorities for fighting cancer on all fronts, with the collaboration of various organizations and experts in the field.

'''Type of information:''' Number of new cancer diagnoses; Cancer incidence; Most frequent cancers; Cancer mortality, survival and prevalence; People invited, total coverage and response rate according to population survey and region of cancer screenings; Diagnoses, treatment and palliative care general information.

'''Data level:''' National and regional level.

'''Access to information:''' Access Information [https://www.kanker.be/kankerbarometer].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/landenprofiel-voor-kanker-belgie-2023_1700ff9f-nl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Belgium

2023-08-29T15:04:40Z

Akemi: /* Database: StatBel Cause of Death Registry */

== Cancer Centers ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
</div>

== Healthcare System ==
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Belgium's healthcare system is a compulsory, social health insurance system. It operates under a model that combines both public and private sectors, with a blend of universal coverage and income-based premiums.

The system is managed by the Ministry of Health at the national level, composed of the Federal Public Service for Health, Food Chain Safety, and Environment, and by regional governments in Flanders, Wallonia, and Brussels-Capital. Health insurance funds, known as "mutualities," are responsible for the management of the social health insurance system.

The Belgian population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, mental health services, dental care, maternity care, rehabilitation services, and prescription medications. Preventive care and health promotion services are also provided. There is no gatekeeping system in place.

All Belgian residents are required to join a health insurance fund, which is typically linked to their employment or their family's employment. Access to healthcare benefits is granted upon registration with a health insurance fund, and coverage extends to dependents as well. The system is funded by income-based contributions from employees, employers, and the government, ensuring comprehensive coverage for all citizens.

Belgium has implemented a nationwide electronic health record (EHR) system called eHealth. This platform securely centralizes patients' medical records, allowing healthcare providers to access and update relevant information. Data from insurance claims, registries, and other sources is also collected and stored in the eHealth system, which aims to improve the overall efficiency and quality of care while maintaining patient privacy.
</div>

== Administrative or Claims Data ==
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=== Database: AIM-IMA Healthcare Data ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on health care services provided to members of Belgium's seven health insurance funds under compulsory health insurance.

'''Type of information:''' [[Data Dictionary: AIM-IMA Healthcare Data]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Gz].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Pharmanet ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To store information on reimbursed drugs and medical devices dispensed in Belgian public pharmacies for members of the seven health insurance funds.

'''Type of information:''' [[Data Dictionary: AIM-IMA Pharmanet]]. More information about the database [https://metadata.ima-aim.be/fr/app/bdds/Fu].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 99% of the population of Belgium.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].

=== Database: AIM-IMA Échantillon Permantent(e) Steekproef (EPS) ===

'''Sponsor, manager or home institution:''' AIM-IMA.

'''Primary purpose:''' To provide a longitudinal compilation of administrative health insurance data for federal and regional partners in Belgium.

'''Type of information:''' In the EPS database are all the variables available in the Population, Healthcare, Pharmanet and Hospitalizations databases [https://metadata.ima-aim.be/fr/app/bdds/Ps].

'''Source of Information:''' Health insurance fund records.

'''Data level:''' Patient level.

'''Number of Records:''' 285,000 policyholders and 56,000 policyholders aged 65 and above.

'''Date Range:''' Unknown.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Partially publicly available [https://atlas.aim-ima.be/base-de-donnees/?rw=1&lang=fr].

'''Information/Contact for data request:''' Contact information [https://www.ima-aim.be/Contact].
</div>

== Registries ==
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=== Database: Belgian Cancer Registry ===

'''Sponsor, manager or home institution:''' Belgian Cancer Registry.

'''Primary purpose:''' To collect and provide information about cancer in the country

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Cancer incidence, sex, age-specific, age group, year, tumour type and region [https://kankerregister.org/default.aspx?PageId=642].

'''Source of Information:''' Healthcare facilities that have oncology care programs and provide services for pathological anatomy are required by law to collaborate with cancer registration.

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' Head and neck (C00-C14, C30-C32); Oesophagus (C15); Stomach (C16); Colon and rectum (C18-C20); Liver, galbladder and bile ducts (C22-C24); Pancreas (C25); Lung (C34); Bone (C40-C41); Malignant melanoma (C43); Breast (C50); Cervix uteri (C53); Corpus uteri (C54); Ovary (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Meninges, brain and central nervous system (C70-C72); Thyroid (C73); Hodgkin lymphoma (C81); Non-Hodgkin lymphoma (C82-C86); Myeloma (C90); Leukaemia (C91-C95); Myelodysplastic syndromes – Myeloproliferative disorders (MDS-MPD); Invasive tumours (excl. non-melanoma) (C00-C43, C45-C97).

'''Open data access:''' Partially publicly available [https://kankerregister.org/default.aspx?PageId=642]. Instructions to request data for restricted content [https://kankerregister.org/Requesting%20specific%20data].

'''Information/Contact for data request:''' Contact information [https://kankerregister.org/default.aspx?PageId=614].

=== Database: StatBel Cause of Death Registry ===

'''Sponsor, manager or home institution:''' Statistics Belgium.

'''Primary purpose:''' To compile statistics on causes of death in Belgium using statistical declaration-of-death forms and WHO's ICD-10 coding.

'''Type of information:''' Cause of death and number of deaths, month, year, age group, sex, and region [https://statbel.fgov.be/en/open-data/causes-death-month-sex-age-group-and-region]. Further sociodemographic and medical information is available on request, both for citizens in aggregated form and for scientific research in the form of microdata.

'''Source of Information:''' Statistical declaration-of-death forms (Model IIIC and Model IIID) that are filled out by a certifying physician and completed by the municipal administration of the place of death for every death that occurs in Belgium, which are then forwarded to the Communities and aggregated by AD Statistics to compile the statistics at the federal level. In addition to the death registration forms, the data are supplemented by information on deaths registered in the RNPP (National Population Register). See documentation [https://wiki.beaconcancer.org/index.php?title=Belgium#Database:_StatBel_Cause_of_Death_Registry].

'''Data level:''' Patient level.

'''Available data level:''' National and regional level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1998 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://statbel.fgov.be/en/themes/population/mortality-life-expectancy-and-causes-death/causes-death#figures]. Instructions to request data for restricted content [https://statbel.fgov.be/en/about-statbel/what-we-do/microdata-research].

'''Information/Contact for data request:''' Contact information [https://statbel.fgov.be/en/contact].

== Clinical Practices Guidelines ==
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=== KCE Guidelines ===
'''Sponsor, manager or home institution:''' Federaal Kenniscentrum voor de Gezondheidszorg.

'''Primary purpose:''' Provides evidence-based recommendations for management, diagnosing, treating, and following up of many types of cancer.

'''Type of information:''' Guidelines information about management and quality of life of cancer patients, diagnoses, treatment and follow up of many types of cancers, such as breast cancer, renal cancer, ovarian cancer, bladder cancer, etc.

'''Access to information:''' List of guidelines [https://kce.fgov.be/en/publications/all-reports-0?f%5B0%5D=alle-kce-rapporten-general-domain%3Agood-clinical-practice&sort_by=paddle_publication_date&sort_order=DESC].
</div>


</div>

== Cancer-related Patient Associations and Resources ==
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=== Compilation: ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology

'''Primary purpose:''' To translate complex medical language into understandable information for patients.

'''Available guides:''' Side Effects of Immunotherapy and Its Management; AML; Bone Sarcomas; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancers; CML; Stomach Cancer; Soft Tissue Sarcomas.

'''Type of information:''' Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

'''Access to information:''' List of guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-dutch].

== Latest Policymaking Initiatives ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== Report: Belgian Cancer Barometer ===

'''Sponsor, manager or home institution:''' Stichting Tegen Kanker.

'''Primary purpose:''' To create a comprehensive reference work on cancer care in Belgium, providing a global overview and determining priorities for fighting cancer on all fronts, with the collaboration of various organizations and experts in the field.

'''Type of information:''' Number of new cancer diagnoses; Cancer incidence; Most frequent cancers; Cancer mortality, survival and prevalence; People invited, total coverage and response rate according to population survey and region of cancer screenings; Diagnoses, treatment and palliative care general information.

'''Data level:''' National and regional level.

'''Access to information:''' Access Information [https://www.kanker.be/kankerbarometer].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/landenprofiel-voor-kanker-belgie-2023_1700ff9f-nl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Belgium%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Slovenia

2023-08-22T16:08:55Z

Akemi: /* Database: DORA Breast Cancer Screening */

== Cancer Centers ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
</div>

== Healthcare System ==
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Slovenia uses a universal healthcare system, which is primarily funded through the Health Insurance Institute of Slovenia (Zavod za zdravstveno zavarovanje Slovenije or ZZZS). The system provides comprehensive and compulsory health insurance coverage to all citizens and residents, with opting out not allowed.

The healthcare system is managed at the national level by the Ministry of Health, while the Health Insurance Institute of Slovenia (ZZZS) is responsible for administering the health insurance fund. There are also regional healthcare providers and institutions that operate under the guidance of the national framework. Municipalities have a role in overseeing the organization and provision of primary care, albeit limited in decision-making.

The population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, dental care, maternity care, mental health services, preventive care, and prescription medications. Some services may require co-payments, but the majority of the costs are covered by the national health insurance fund. About 95% of the population purchases complementary Voluntary Health Insurance (VHI) mainly to cover co-payments.

To access the benefits of the healthcare system, individuals must be insured under the ZZZS. This insurance is mandatory for all citizens and residents, and it is typically provided through employment. Unemployed individuals, students, retirees, and other vulnerable groups are also insured through various social programs or via their family members' insurance.

In Slovenia, claims data, registries, and electronic health records are maintained and recorded using a combination of digital systems and traditional methods. The National Institute of Public Health (NIJZ) manages the national health registries, which include data on births, deaths, diseases, and treatments. Electronic health records are increasingly being adopted, with the eHealth project aiming to improve and integrate health information systems to facilitate better care coordination and information sharing among healthcare providers. GPs act as gatekeepers for accessing specialized care, and long waiting times for some specialist services persist.
</div>

== Administrative or Claims Data ==
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=== Database: SiStat Death ===

'''Sponsor, manager or home institution:''' Statistični urad RS; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide data on deaths and natural population trends for the formulation of appropriate demographic, social, health and other policies at national and subnational levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Available type of information:''' Number of deaths; Sex; Age; Number of deaths per 1,000 population; Average age of deaths; Cause of deaths, Life expectancy, and infant deaths per 1,000 live births.

'''Source of Information:''' Surveys. More information can be found in the methodological document [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Unknown.

'''Available date range:''' 2002 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://pxweb.stat.si/SiStat/sl/Podrocja/Index/100/prebivalstvo] under "Population" > "Mortality" > "Cause of Death". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://pxweb.stat.si/SiStatData/pxweb/sl/Data/-/05L3013S.px].

=== Database: NIJZ Sick Leave ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To monitor and analyze the causes and other characteristics of temporary absenteeism.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

'''Available type of information:''' Indicators of the patient population; Year; Gender; Age; Disease groups; Reason for withholding patient population; Economic activities; Health regions and statistical regions.

'''Source of Information:''' Public and private healthcare providers at the primary level (outpatient clinics of selected - personal physicians) report to the regional units of the NIJZ.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1983 onwards.

'''Available date range:''' 2000 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Health status of the population" > "Sick Leave". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

=== Database: NIJZ Outpatient Health (ZUBSTAT) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' The purpose of the out-of-hospital health statistics database (ZUBSTAT) is to monitor, evaluate and
plan curative and preventive health care at the primary and secondary levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Available type of information:''' Number and rate of visits at the primary level; Year; Types of visits; Number and rate of preventive visits; Age group; Gender; Number and rate of curative; Home visits and counseling; Statistical region; Number of corrective visits; Number and rate of diagnosed diseases; Conditions at the primary level; ICD-10; Main diagnoses chapters; Number and rate of visits to specialist outpatient services; Type of medical activity; Number of curative visits in specialist outpatient services and conditions in specialist outpatient services.

'''Source of Information:''' Reported by public and private healthcare providers.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1996 onwards [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Cancer Areas of Interest:''' Neoplasms (C88-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Treatments at primary care level" and "Healthcare" > "Specialized outpatient treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

=== Database: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Monitoring and studying the incidence of diseases, injuries and poisonings that require hospital treatment.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

'''Available type of information:''' Number of hospitalizations due to illness; Gender; Year; Statistical region; Age group; Main diagnoses; ICD-10; Number of first and re-admissions to hospitals; Number of hospitalizations due to injuries and poisoning; Reason for hospital treatment; External cause; Number of deaths; Number of hospitalizations due to accidental injuries and poisoning; Number of hospitalizations due to intentional injuries and poisoning; Number of hospitalizations due to transport accidents with motor vehicles; Type of injury and poisoning; Number of episodes of hospital treatment due to illness, injury and poisoning; Type of treatment; Number of daily hospital treatments due to illnesses, injuries and poisoning; Number of episodes of prolonged hospital treatment due to diseases, injuries and poisoning; Number of episodes of extended hospital treatment due to illness, injury and poisoning; Rate of hospitalizations due to illness (per 1,000 inhabitants); Average duration of hospitalizations due to illness; Average duration of hospitalizations due to illness in days; Percentage of first and re-admissions to hospitals due to illness; Admission type; Proportion of hospitalizations due to illness; Average duration of hospitalization (in days) due to the most common diseases; Rate of hospitalizations (per 1,000 inhabitants) due to injuries and poisoning; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to (un)intentional injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to transport accidents with motor vehicles, suicide and assault and legal intervention; Average duration of hospitalizations (in days) due to injuries and poisonings.

'''Source of Information:''' Reporters are all institutions that perform hospital activities in the Republic of Slovenia.

'''Data level:''' Patient level.

''' Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1965 onwards.

'''Cancer Areas of Interest:''' [[Cancer Areas of Interest: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB)]].

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Hospital treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

=== Database: NIJZ Healthcare Providers ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To serve as a comprehensive national resource for planning, monitoring, and implementing healthcare and health insurance systems, as well as a register for various groups of medical personnel.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Available type of information:''' Year; Age group; Gender; Employees; Professional groups; Statistical regions; Employees according to the list of occupations in the health sector; Type of contractor and legal status; MOH profession; Type of specialization; Specialization status; Indicators of employees in healthcare.

'''Source of Information:''' Providers are registered on the NIJZ, and private providers are managed by the Ministry of Health [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Healthcare Providers". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

=== Database: NIJZ Hospital Beds ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Provide information on hospital beds for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of data:''' Number of hospital beds, Hospital activity; Year; Region; Statistical region of hospitals.

'''Source of Information:''' Report on the work of the inpatient institution.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Hospital Beds". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__3%20Bolni%C5%A1ke%20postelje/Postelje1.px/].

=== Database: NIJZ Medical Devices ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information about medical devices for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6i_MET_POJASNILA_NAPRAVE.pdf].

'''Available type of information:''' Year; Devices in healthcare; Number and rate; Contractor type.

'''Source of Information:''' Administration of the Republic of Slovenia for Radiation Protection; Ministry of Health in cooperation with the Institute for Health Insurance of Slovenia.

'''Data level:''' Hospital level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2004 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Devices in Healthcare". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__2%20Naprave%20v%20zdravstvu/Naprave.px/].

=== Database: ZZZS Number of treatments by healthcare provider ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on treatments provided by healthcare providers for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Days; Months; Year; Contractor; Health worker; Type of medical activity; Subtype of health activity; Number of treatments.

'''Source of Information:''' Unknown.

'''Data level:''' Provider and hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' October, 2022 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_izvedenih_obravnavah_po_zdravstvenem_delavcu/seznam_datotek_4136].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned Number of Teams ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned number of teams by individual providers and medical activities (VZD) for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Year; Name of the activity; Number of teams; Type of ownership; Regional contracting unit; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Type of medical activity; Subtype of health activity; Service code; 4th level of contractual activity; Description of the 4th level of contractual activity; NO. TIMOV.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2013-2020.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_dostopnosti_do_zdravstvenih_storitev/planirano_stevilo_timov/!ut/p/z1/04_Sj9CPykssy0xPLMnMz0vMAfIjo8zivf19DAz9DQwNA3yczA3MLILNPZy9gwzcDc31C7IdFQF0gdKM/].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Health Services ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned and implemented health services for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Activity; Regional contracting unit; Type of ownership; Type of medical activity; Subtype of health activity; Service code; Name of the activity; Plan; Rea; Index; Plan O,P; Rea O,P; Index O,P; ZZZS no. contractor; IVZ no. contractor; Name of the contractor.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital and regional level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available, for data before 2022 [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/ZbirniPlanRealizacija?openview&count=1000] and [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/plan_in_realizacija/podatki_o_planu_in_realizaciji_zdrav_storitve/seznam_datotek#Z7_KOL01O011PO860QNVUM8V00IU0] for data after 2022.

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Imaging Diagnostics for the Detection or Treatment of Cancer ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the imaging diagnostics for the detection or treatment of cancer for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Plan; Rea; Rea for Rak; Index; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Contractor nº.; Regional contracting unit; Type; Subtype; Service.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 and 2019.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/slike?openview&count=1000].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].
</div>

== Registries ==
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=== Database: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Institute of Oncology Ljubljana [https://www.onko-i.si/eng/].

'''Primary purpose:''' To provide comprehensive historical and ongoing data on cancer incidence, prevalence, mortality, and survival in Slovenia, serving as a critical resource for evaluating the effectiveness of cancer prevention, diagnosis, treatment, and care, as well as for planning necessary resources for cancer control.

'''Type of information:''' Definitions of available cancer burden measures in the website [http://www.slora.si/en/definicije-kazalnikov-in-metod].

'''Source of Information:''' Source for incidence and prevalence is the Slovenian Cancer Registry (SCR) [https://www.onko-i.si/eng/crs]. Source for Mortality is the Nacionalni inštitut za javno zdravje (NIJZ) [http://www.nijz.si/].

'''Data level:''' Aggregated level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' N/A.

'''Date Range:''' 1961 onwards.

'''Cancer Areas of Interest:''' All malignant neoplasms and some additional benign and in situ entities.

'''Open data access:''' Partially publicly available [http://www.slora.si/en/]. Reports information [https://www.onko-i.si/eng/crs]. Instructions to request data for restricted content [https://www.onko-i.si/rrs].

'''Information/Contact for data request:''' Contact information [https://www.onko-i.si/eng/crs].

=== Database: Programme Svit Colorectal Cancer Screening ===

'''Sponsor, manager or home institution:''' Svit Programme; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information on the colonoscopy screenings performed by the Svit Programme in order to support research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Response in the Svit Programme; Gender; Region; Municipalities; Year.

'''Source of Information:''' Information collected by the Svit Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa].

'''Date Range:''' 2010 onwards [https://podatki.nijz.si/docs/Metodolo%C5%A1ka_pojasnila_SVIT.pdf].

'''Cancer Areas of Interest:''' Malignant neoplasm of the colon (C18); Malignant neoplasm of the rectosigmoid junction (C19); Malignant neoplasm of the rectum (C20); Benign neoplasm of colon, rectum, anus and anal canal (D12).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Preventive Programs" > "National program for screening and early detection of precancerous changes and colon and rectal cancer (Svit)". Reports information [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa]. Instructions to request data for restricted content [https://podatki.nijz.si/docs/Navodila_za_uporabnike_2022.pdf] in the "Contact section".

'''Information/Contact for data request:''' Contact information [https://www.program-svit.si/] at the end of the page.

=== Database: DORA Breast Cancer Screening Registry ===

'''Sponsor, manager or home institution:''' DORA Programme; Institute of Oncology Ljubljana, Slovenia.

'''Primary purpose:''' To provide information on the breast screenings performed by the DORA Program in order to support research and policymaking.

'''Type of information:''' There is no data dictionary available.

'''Available type of information:''' Regional unit; Year; Age group; Screening round number; Number of women pictured; Number of women invited to mammography; Participation in the DORA program; Conference consensus; Number of women on additional treatments; Number of breast cancers detected; Number of screening centers in operation; Proportion of invited women who attended screening mammography; Proportion of women attending follow-up; Proportion of invasive cancers; Breast cancer detection rate (per 1,000 women screened); Screening-detected invasive cancers with negative lymph nodes; Proportion in screening of detected cancers that are stage II or higher; Proportion of detected invasive cancers that are <= 10 mm in the first round of screening; Proportion of invasive cancers < 15 mm detected in screening; Time interval between screening imaging and screening mammography result time; Interval between preoperative conference and date for surgery.

'''Source of Information:''' Information collected by the DORA Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://dora.onko-i.si/dokumenti].

'''Date Range:''' 2008 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of breast (C50) and noninvasive cancer (D05).

'''Open data access:''' Partially publicly available [https://dora.onko-i.si/dokumenti]. Instructions to request data for restricted content [https://dora.onko-i.si/dokumenti] in "More Information".

'''Information/Contact for data request:''' Contact information [https://dora.onko-i.si/dokumenti] at the end of the page.

=== Database: Cervical Cancer Screening Registry ZORA ===

'''Sponsor, manager or home institution:''' ZORA Programme; Institute of Oncology Ljubljana, Slovenia.

'''Primary purpose:''' To reduce morbidity and mortality from cervical cancer in Slovenia.

'''Type of information:''' There is no data dictionary available.

'''Available type of information:''' Data on monitoring and evaluation: 3-year examination coverage by: year, age group, territorial unit, no. of examined women, no. of women with permanent residence, and transparency; Citology results: number of all screening smears satisfactory for evaluation and screening results stratified by calendar years; HPV triage test: number of all HPV triage test by calendar years and indication for the test; Histopatology: number of all invasive procedures on cervix by calendar years, procedure and histopathology results; High-grade cervical lesions: population data, no. of women with newly diagnosed HSIL/CIN2+ by calendar years and age groups; and Cervical cancer: incidence (data from Slovenian Cancer Registry).

'''Source of Information:''' Information collected by the ZORA Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://zora.onko-i.si/publikacije/letna-porocila].

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of cervix uteri (C53); Carcinoma in situ of cervix uteri (D06).

'''Open data access:''' It is not possible for researchers to access the ZORA programme database directly. It is possible to receive the data from the ZORA registry on request in accordance with their protocol for screening data access. Publicly available data [https://zora.onko-i.si/publikacije/kazalniki] and [https://zora.onko-i.si/en/monitoring-and-evaluation]. Reports information [https://zora.onko-i.si/publikacije/letna-porocila]. Instructions to request data for restricted content [https://zora.onko-i.si/program-zora/register-zora].

'''Information/Contact for data request:''' Contact information [https://zora.onko-i.si/pomozne-strani/kontakt].

== Clinical Practices Guidelines ==
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=== Onko Guidelines ===

'''Sponsor, manager or home institution:''' Onkološki inštitut Ljubljana.

'''Primary purpose:''' To provide practical recommendations and improve the development, organization, and clinical practices on cancer.

'''Type of information:''' Recommendations care, treatments, palliative care, prevention, diagnoses, quality of life, follow up of various types of cancer.

'''Access to information:''' List of guidelines [https://www.onko-i.si/priporocila].
</div>

</div>

== Cancer-related Patient Associations and Resources ==
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=== Non-governmental organizations ===

'''Sponsor, manager or home institution:''' Various oncology institutions and societies in Slovenia.

'''Primary purpose:''' To support and empower cancer patients, raise awareness about cancer prevention and treatment, provide education and resources, advocate for patients' rights, improve the quality of life for those affected by cancer, and promote collaboration between various stakeholders in the field of oncology.

'''Access to information:''' Information [https://www.onko-i.si/za_javnost_in_bolnike/nevladne_organizacije].

=== ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology (ESMO).

'''Primary purpose:''' Provide patients, their relatives and caregivers guides to better understand complex medical information about different types of cancer.

'''Available guides:''' Cancer Treatment During the COVID-19 Pandemic; Side Effects Associated with Immunotherapy and Their Management; Personalized Medicine in Oncology; Life with Cancer; Breast Cancer; Ovarian Cancer; Cervical Cancer.

'''Type of information:''' Laymen-directed descriptions of specific cancers, their causes, diagnoses, treatment, screening, and side effects, among other relevant information for patients, their relatives and caregivers.

'''Access to information:''' Patient Guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-croatian].

== Latest Policymaking Initiatives ==
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=== Reports: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Register raka Republike Slovenije.

'''Primary purpose:''' To collect and process data on cancer incidence and patients' survival, being one of the oldest population-based cancer registries in Europe, and a member of the International Association of Cancer Registries and the European Network of Cancer Registries.

'''Type of information:''' The most common cancers; Cancer survive; Cancer incidence; Cancer prevalence and mortality; Number and proportions of patients who were operated on, treated with systemic treatment or irradiated; Number of patients who fell ill in and underwent surgery; Number of patients who received systemic treatment or therapy.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://www.onko-i.si/eng/crs].

=== Reports: ZORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; ZORA Program.

'''Primary purpose:''' To actively screen and reduce morbidity and mortality from cervical cancer in Slovenia, aiming for at least 70% coverage of women aged 20-64 through regular cervical smear examinations every three years.

'''Type of information:''' The percentage of women in the target group who are screened according to the program guidelines (screening); The number of new patients in a given year; (RMV incidence rate); Mortality due to RMV; The ratio between the number of newly detected precancerous and cancerous changes per year.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://zora.onko-i.si/publikacije/letna-porocila].

=== Reports: DORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; DORA Program.

'''Primary purpose:''' The early detection of breast cancer among women aged 50 to 69 in Slovenia, aiming to reduce breast cancer mortality by 25 to 30 percent through regular screening mammography and informed participation.

'''Type of information:''' Coverage and participation of the DORA Program; Number of breast screenings; Cancers detected in the screening program.

'''Data level:''' National level.

'''Access to information:''' Access Information > To access annual reports, go to DORA program reports [https://dora.onko-i.si/dokumenti].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/profil-drzav-o-stanju-na-podrocju-raka-slovenija-2023_fd31a438-sl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Slovenia

2023-08-22T16:04:59Z

Akemi: /* Database: Cervical Cancer Screening Registry ZORA */

== Cancer Centers ==
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</div>

== Healthcare System ==
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Slovenia uses a universal healthcare system, which is primarily funded through the Health Insurance Institute of Slovenia (Zavod za zdravstveno zavarovanje Slovenije or ZZZS). The system provides comprehensive and compulsory health insurance coverage to all citizens and residents, with opting out not allowed.

The healthcare system is managed at the national level by the Ministry of Health, while the Health Insurance Institute of Slovenia (ZZZS) is responsible for administering the health insurance fund. There are also regional healthcare providers and institutions that operate under the guidance of the national framework. Municipalities have a role in overseeing the organization and provision of primary care, albeit limited in decision-making.

The population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, dental care, maternity care, mental health services, preventive care, and prescription medications. Some services may require co-payments, but the majority of the costs are covered by the national health insurance fund. About 95% of the population purchases complementary Voluntary Health Insurance (VHI) mainly to cover co-payments.

To access the benefits of the healthcare system, individuals must be insured under the ZZZS. This insurance is mandatory for all citizens and residents, and it is typically provided through employment. Unemployed individuals, students, retirees, and other vulnerable groups are also insured through various social programs or via their family members' insurance.

In Slovenia, claims data, registries, and electronic health records are maintained and recorded using a combination of digital systems and traditional methods. The National Institute of Public Health (NIJZ) manages the national health registries, which include data on births, deaths, diseases, and treatments. Electronic health records are increasingly being adopted, with the eHealth project aiming to improve and integrate health information systems to facilitate better care coordination and information sharing among healthcare providers. GPs act as gatekeepers for accessing specialized care, and long waiting times for some specialist services persist.
</div>

== Administrative or Claims Data ==
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=== Database: SiStat Death ===

'''Sponsor, manager or home institution:''' Statistični urad RS; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide data on deaths and natural population trends for the formulation of appropriate demographic, social, health and other policies at national and subnational levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Available type of information:''' Number of deaths; Sex; Age; Number of deaths per 1,000 population; Average age of deaths; Cause of deaths, Life expectancy, and infant deaths per 1,000 live births.

'''Source of Information:''' Surveys. More information can be found in the methodological document [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Unknown.

'''Available date range:''' 2002 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://pxweb.stat.si/SiStat/sl/Podrocja/Index/100/prebivalstvo] under "Population" > "Mortality" > "Cause of Death". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://pxweb.stat.si/SiStatData/pxweb/sl/Data/-/05L3013S.px].

=== Database: NIJZ Sick Leave ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To monitor and analyze the causes and other characteristics of temporary absenteeism.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

'''Available type of information:''' Indicators of the patient population; Year; Gender; Age; Disease groups; Reason for withholding patient population; Economic activities; Health regions and statistical regions.

'''Source of Information:''' Public and private healthcare providers at the primary level (outpatient clinics of selected - personal physicians) report to the regional units of the NIJZ.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1983 onwards.

'''Available date range:''' 2000 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Health status of the population" > "Sick Leave". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

=== Database: NIJZ Outpatient Health (ZUBSTAT) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' The purpose of the out-of-hospital health statistics database (ZUBSTAT) is to monitor, evaluate and
plan curative and preventive health care at the primary and secondary levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Available type of information:''' Number and rate of visits at the primary level; Year; Types of visits; Number and rate of preventive visits; Age group; Gender; Number and rate of curative; Home visits and counseling; Statistical region; Number of corrective visits; Number and rate of diagnosed diseases; Conditions at the primary level; ICD-10; Main diagnoses chapters; Number and rate of visits to specialist outpatient services; Type of medical activity; Number of curative visits in specialist outpatient services and conditions in specialist outpatient services.

'''Source of Information:''' Reported by public and private healthcare providers.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1996 onwards [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Cancer Areas of Interest:''' Neoplasms (C88-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Treatments at primary care level" and "Healthcare" > "Specialized outpatient treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

=== Database: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Monitoring and studying the incidence of diseases, injuries and poisonings that require hospital treatment.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

'''Available type of information:''' Number of hospitalizations due to illness; Gender; Year; Statistical region; Age group; Main diagnoses; ICD-10; Number of first and re-admissions to hospitals; Number of hospitalizations due to injuries and poisoning; Reason for hospital treatment; External cause; Number of deaths; Number of hospitalizations due to accidental injuries and poisoning; Number of hospitalizations due to intentional injuries and poisoning; Number of hospitalizations due to transport accidents with motor vehicles; Type of injury and poisoning; Number of episodes of hospital treatment due to illness, injury and poisoning; Type of treatment; Number of daily hospital treatments due to illnesses, injuries and poisoning; Number of episodes of prolonged hospital treatment due to diseases, injuries and poisoning; Number of episodes of extended hospital treatment due to illness, injury and poisoning; Rate of hospitalizations due to illness (per 1,000 inhabitants); Average duration of hospitalizations due to illness; Average duration of hospitalizations due to illness in days; Percentage of first and re-admissions to hospitals due to illness; Admission type; Proportion of hospitalizations due to illness; Average duration of hospitalization (in days) due to the most common diseases; Rate of hospitalizations (per 1,000 inhabitants) due to injuries and poisoning; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to (un)intentional injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to transport accidents with motor vehicles, suicide and assault and legal intervention; Average duration of hospitalizations (in days) due to injuries and poisonings.

'''Source of Information:''' Reporters are all institutions that perform hospital activities in the Republic of Slovenia.

'''Data level:''' Patient level.

''' Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1965 onwards.

'''Cancer Areas of Interest:''' [[Cancer Areas of Interest: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB)]].

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Hospital treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

=== Database: NIJZ Healthcare Providers ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To serve as a comprehensive national resource for planning, monitoring, and implementing healthcare and health insurance systems, as well as a register for various groups of medical personnel.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Available type of information:''' Year; Age group; Gender; Employees; Professional groups; Statistical regions; Employees according to the list of occupations in the health sector; Type of contractor and legal status; MOH profession; Type of specialization; Specialization status; Indicators of employees in healthcare.

'''Source of Information:''' Providers are registered on the NIJZ, and private providers are managed by the Ministry of Health [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Healthcare Providers". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

=== Database: NIJZ Hospital Beds ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Provide information on hospital beds for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of data:''' Number of hospital beds, Hospital activity; Year; Region; Statistical region of hospitals.

'''Source of Information:''' Report on the work of the inpatient institution.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Hospital Beds". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__3%20Bolni%C5%A1ke%20postelje/Postelje1.px/].

=== Database: NIJZ Medical Devices ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information about medical devices for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6i_MET_POJASNILA_NAPRAVE.pdf].

'''Available type of information:''' Year; Devices in healthcare; Number and rate; Contractor type.

'''Source of Information:''' Administration of the Republic of Slovenia for Radiation Protection; Ministry of Health in cooperation with the Institute for Health Insurance of Slovenia.

'''Data level:''' Hospital level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2004 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Devices in Healthcare". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__2%20Naprave%20v%20zdravstvu/Naprave.px/].

=== Database: ZZZS Number of treatments by healthcare provider ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on treatments provided by healthcare providers for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Days; Months; Year; Contractor; Health worker; Type of medical activity; Subtype of health activity; Number of treatments.

'''Source of Information:''' Unknown.

'''Data level:''' Provider and hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' October, 2022 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_izvedenih_obravnavah_po_zdravstvenem_delavcu/seznam_datotek_4136].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned Number of Teams ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned number of teams by individual providers and medical activities (VZD) for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Year; Name of the activity; Number of teams; Type of ownership; Regional contracting unit; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Type of medical activity; Subtype of health activity; Service code; 4th level of contractual activity; Description of the 4th level of contractual activity; NO. TIMOV.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2013-2020.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_dostopnosti_do_zdravstvenih_storitev/planirano_stevilo_timov/!ut/p/z1/04_Sj9CPykssy0xPLMnMz0vMAfIjo8zivf19DAz9DQwNA3yczA3MLILNPZy9gwzcDc31C7IdFQF0gdKM/].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Health Services ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned and implemented health services for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Activity; Regional contracting unit; Type of ownership; Type of medical activity; Subtype of health activity; Service code; Name of the activity; Plan; Rea; Index; Plan O,P; Rea O,P; Index O,P; ZZZS no. contractor; IVZ no. contractor; Name of the contractor.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital and regional level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available, for data before 2022 [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/ZbirniPlanRealizacija?openview&count=1000] and [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/plan_in_realizacija/podatki_o_planu_in_realizaciji_zdrav_storitve/seznam_datotek#Z7_KOL01O011PO860QNVUM8V00IU0] for data after 2022.

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Imaging Diagnostics for the Detection or Treatment of Cancer ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the imaging diagnostics for the detection or treatment of cancer for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Plan; Rea; Rea for Rak; Index; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Contractor nº.; Regional contracting unit; Type; Subtype; Service.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 and 2019.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/slike?openview&count=1000].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].
</div>

== Registries ==
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=== Database: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Institute of Oncology Ljubljana [https://www.onko-i.si/eng/].

'''Primary purpose:''' To provide comprehensive historical and ongoing data on cancer incidence, prevalence, mortality, and survival in Slovenia, serving as a critical resource for evaluating the effectiveness of cancer prevention, diagnosis, treatment, and care, as well as for planning necessary resources for cancer control.

'''Type of information:''' Definitions of available cancer burden measures in the website [http://www.slora.si/en/definicije-kazalnikov-in-metod].

'''Source of Information:''' Source for incidence and prevalence is the Slovenian Cancer Registry (SCR) [https://www.onko-i.si/eng/crs]. Source for Mortality is the Nacionalni inštitut za javno zdravje (NIJZ) [http://www.nijz.si/].

'''Data level:''' Aggregated level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' N/A.

'''Date Range:''' 1961 onwards.

'''Cancer Areas of Interest:''' All malignant neoplasms and some additional benign and in situ entities.

'''Open data access:''' Partially publicly available [http://www.slora.si/en/]. Reports information [https://www.onko-i.si/eng/crs]. Instructions to request data for restricted content [https://www.onko-i.si/rrs].

'''Information/Contact for data request:''' Contact information [https://www.onko-i.si/eng/crs].

=== Database: Programme Svit Colorectal Cancer Screening ===

'''Sponsor, manager or home institution:''' Svit Programme; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information on the colonoscopy screenings performed by the Svit Programme in order to support research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Response in the Svit Programme; Gender; Region; Municipalities; Year.

'''Source of Information:''' Information collected by the Svit Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa].

'''Date Range:''' 2010 onwards [https://podatki.nijz.si/docs/Metodolo%C5%A1ka_pojasnila_SVIT.pdf].

'''Cancer Areas of Interest:''' Malignant neoplasm of the colon (C18); Malignant neoplasm of the rectosigmoid junction (C19); Malignant neoplasm of the rectum (C20); Benign neoplasm of colon, rectum, anus and anal canal (D12).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Preventive Programs" > "National program for screening and early detection of precancerous changes and colon and rectal cancer (Svit)". Reports information [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa]. Instructions to request data for restricted content [https://podatki.nijz.si/docs/Navodila_za_uporabnike_2022.pdf] in the "Contact section".

'''Information/Contact for data request:''' Contact information [https://www.program-svit.si/] at the end of the page.

=== Database: DORA Breast Cancer Screening ===

'''Sponsor, manager or home institution:''' DORA Program; Ljubljana Oncology Institute.

'''Primary purpose:''' To provide information on the breast screenings performed by the DORA Program in order to support research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Regional unit; Year; Age group; Screening round number; Number of women pictured; Number of women invited to mammography; Participation in the DORA program; Conference consensus; Number of women on additional treatments; Number of breast cancers detected; Number of screening centers in operation; Proportion of invited women who attended screening mammography; Proportion of women attending follow-up; Proportion of invasive cancers; Breast cancer detection rate (per 1,000 women screened); Screening-detected invasive cancers with negative lymph nodes; Proportion in screening of detected cancers that are stage II or higher; Proportion of detected invasive cancers that are <= 10 mm in the first round of screening; Proportion of invasive cancers < 15 mm detected in screening; Time interval between screening imaging and screening mammography result time; Interval between preoperative conference and date for surgery.

'''Source of Information:''' Information collected by the DORA Program.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://dora.onko-i.si/dokumenti].

'''Date Range:''' 2008 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of breast (C50).

'''Open data access:''' Partially publicly available [https://dora.onko-i.si/dokumenti]. Instructions to request data for restricted content [https://dora.onko-i.si/dokumenti] in "More Information".

'''Information/Contact for data request:''' Contact information [https://dora.onko-i.si/dokumenti] at the end of the page.

=== Database: Cervical Cancer Screening Registry ZORA ===

'''Sponsor, manager or home institution:''' ZORA Programme; Institute of Oncology Ljubljana, Slovenia.

'''Primary purpose:''' To reduce morbidity and mortality from cervical cancer in Slovenia.

'''Type of information:''' There is no data dictionary available.

'''Available type of information:''' Data on monitoring and evaluation: 3-year examination coverage by: year, age group, territorial unit, no. of examined women, no. of women with permanent residence, and transparency; Citology results: number of all screening smears satisfactory for evaluation and screening results stratified by calendar years; HPV triage test: number of all HPV triage test by calendar years and indication for the test; Histopatology: number of all invasive procedures on cervix by calendar years, procedure and histopathology results; High-grade cervical lesions: population data, no. of women with newly diagnosed HSIL/CIN2+ by calendar years and age groups; and Cervical cancer: incidence (data from Slovenian Cancer Registry).

'''Source of Information:''' Information collected by the ZORA Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://zora.onko-i.si/publikacije/letna-porocila].

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of cervix uteri (C53); Carcinoma in situ of cervix uteri (D06).

'''Open data access:''' It is not possible for researchers to access the ZORA programme database directly. It is possible to receive the data from the ZORA registry on request in accordance with their protocol for screening data access. Publicly available data [https://zora.onko-i.si/publikacije/kazalniki] and [https://zora.onko-i.si/en/monitoring-and-evaluation]. Reports information [https://zora.onko-i.si/publikacije/letna-porocila]. Instructions to request data for restricted content [https://zora.onko-i.si/program-zora/register-zora].

'''Information/Contact for data request:''' Contact information [https://zora.onko-i.si/pomozne-strani/kontakt].

== Clinical Practices Guidelines ==
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=== Onko Guidelines ===

'''Sponsor, manager or home institution:''' Onkološki inštitut Ljubljana.

'''Primary purpose:''' To provide practical recommendations and improve the development, organization, and clinical practices on cancer.

'''Type of information:''' Recommendations care, treatments, palliative care, prevention, diagnoses, quality of life, follow up of various types of cancer.

'''Access to information:''' List of guidelines [https://www.onko-i.si/priporocila].
</div>

</div>

== Cancer-related Patient Associations and Resources ==
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=== Non-governmental organizations ===

'''Sponsor, manager or home institution:''' Various oncology institutions and societies in Slovenia.

'''Primary purpose:''' To support and empower cancer patients, raise awareness about cancer prevention and treatment, provide education and resources, advocate for patients' rights, improve the quality of life for those affected by cancer, and promote collaboration between various stakeholders in the field of oncology.

'''Access to information:''' Information [https://www.onko-i.si/za_javnost_in_bolnike/nevladne_organizacije].

=== ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology (ESMO).

'''Primary purpose:''' Provide patients, their relatives and caregivers guides to better understand complex medical information about different types of cancer.

'''Available guides:''' Cancer Treatment During the COVID-19 Pandemic; Side Effects Associated with Immunotherapy and Their Management; Personalized Medicine in Oncology; Life with Cancer; Breast Cancer; Ovarian Cancer; Cervical Cancer.

'''Type of information:''' Laymen-directed descriptions of specific cancers, their causes, diagnoses, treatment, screening, and side effects, among other relevant information for patients, their relatives and caregivers.

'''Access to information:''' Patient Guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-croatian].

== Latest Policymaking Initiatives ==
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=== Reports: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Register raka Republike Slovenije.

'''Primary purpose:''' To collect and process data on cancer incidence and patients' survival, being one of the oldest population-based cancer registries in Europe, and a member of the International Association of Cancer Registries and the European Network of Cancer Registries.

'''Type of information:''' The most common cancers; Cancer survive; Cancer incidence; Cancer prevalence and mortality; Number and proportions of patients who were operated on, treated with systemic treatment or irradiated; Number of patients who fell ill in and underwent surgery; Number of patients who received systemic treatment or therapy.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://www.onko-i.si/eng/crs].

=== Reports: ZORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; ZORA Program.

'''Primary purpose:''' To actively screen and reduce morbidity and mortality from cervical cancer in Slovenia, aiming for at least 70% coverage of women aged 20-64 through regular cervical smear examinations every three years.

'''Type of information:''' The percentage of women in the target group who are screened according to the program guidelines (screening); The number of new patients in a given year; (RMV incidence rate); Mortality due to RMV; The ratio between the number of newly detected precancerous and cancerous changes per year.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://zora.onko-i.si/publikacije/letna-porocila].

=== Reports: DORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; DORA Program.

'''Primary purpose:''' The early detection of breast cancer among women aged 50 to 69 in Slovenia, aiming to reduce breast cancer mortality by 25 to 30 percent through regular screening mammography and informed participation.

'''Type of information:''' Coverage and participation of the DORA Program; Number of breast screenings; Cancers detected in the screening program.

'''Data level:''' National level.

'''Access to information:''' Access Information > To access annual reports, go to DORA program reports [https://dora.onko-i.si/dokumenti].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/profil-drzav-o-stanju-na-podrocju-raka-slovenija-2023_fd31a438-sl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Slovenia

2023-08-22T16:03:46Z

Akemi: /* Database: ZORA Cervical Cancer Screening */

== Cancer Centers ==
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</div>

== Healthcare System ==
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Slovenia uses a universal healthcare system, which is primarily funded through the Health Insurance Institute of Slovenia (Zavod za zdravstveno zavarovanje Slovenije or ZZZS). The system provides comprehensive and compulsory health insurance coverage to all citizens and residents, with opting out not allowed.

The healthcare system is managed at the national level by the Ministry of Health, while the Health Insurance Institute of Slovenia (ZZZS) is responsible for administering the health insurance fund. There are also regional healthcare providers and institutions that operate under the guidance of the national framework. Municipalities have a role in overseeing the organization and provision of primary care, albeit limited in decision-making.

The population receives a wide range of healthcare benefits through the system, including primary care, specialist care, hospital care, dental care, maternity care, mental health services, preventive care, and prescription medications. Some services may require co-payments, but the majority of the costs are covered by the national health insurance fund. About 95% of the population purchases complementary Voluntary Health Insurance (VHI) mainly to cover co-payments.

To access the benefits of the healthcare system, individuals must be insured under the ZZZS. This insurance is mandatory for all citizens and residents, and it is typically provided through employment. Unemployed individuals, students, retirees, and other vulnerable groups are also insured through various social programs or via their family members' insurance.

In Slovenia, claims data, registries, and electronic health records are maintained and recorded using a combination of digital systems and traditional methods. The National Institute of Public Health (NIJZ) manages the national health registries, which include data on births, deaths, diseases, and treatments. Electronic health records are increasingly being adopted, with the eHealth project aiming to improve and integrate health information systems to facilitate better care coordination and information sharing among healthcare providers. GPs act as gatekeepers for accessing specialized care, and long waiting times for some specialist services persist.
</div>

== Administrative or Claims Data ==
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=== Database: SiStat Death ===

'''Sponsor, manager or home institution:''' Statistični urad RS; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide data on deaths and natural population trends for the formulation of appropriate demographic, social, health and other policies at national and subnational levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Available type of information:''' Number of deaths; Sex; Age; Number of deaths per 1,000 population; Average age of deaths; Cause of deaths, Life expectancy, and infant deaths per 1,000 live births.

'''Source of Information:''' Surveys. More information can be found in the methodological document [https://www.stat.si/statweb/File/DocSysFile/9513].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Unknown.

'''Available date range:''' 2002 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://pxweb.stat.si/SiStat/sl/Podrocja/Index/100/prebivalstvo] under "Population" > "Mortality" > "Cause of Death". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://pxweb.stat.si/SiStatData/pxweb/sl/Data/-/05L3013S.px].

=== Database: NIJZ Sick Leave ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To monitor and analyze the causes and other characteristics of temporary absenteeism.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

'''Available type of information:''' Indicators of the patient population; Year; Gender; Age; Disease groups; Reason for withholding patient population; Economic activities; Health regions and statistical regions.

'''Source of Information:''' Public and private healthcare providers at the primary level (outpatient clinics of selected - personal physicians) report to the regional units of the NIJZ.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1983 onwards.

'''Available date range:''' 2000 onwards.

'''Cancer Areas of Interest:''' Neoplasms (C00-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Health status of the population" > "Sick Leave". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/3_3f_BS_2018.pdf].

=== Database: NIJZ Outpatient Health (ZUBSTAT) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' The purpose of the out-of-hospital health statistics database (ZUBSTAT) is to monitor, evaluate and
plan curative and preventive health care at the primary and secondary levels.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Available type of information:''' Number and rate of visits at the primary level; Year; Types of visits; Number and rate of preventive visits; Age group; Gender; Number and rate of curative; Home visits and counseling; Statistical region; Number of corrective visits; Number and rate of diagnosed diseases; Conditions at the primary level; ICD-10; Main diagnoses chapters; Number and rate of visits to specialist outpatient services; Type of medical activity; Number of curative visits in specialist outpatient services and conditions in specialist outpatient services.

'''Source of Information:''' Reported by public and private healthcare providers.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1996 onwards [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

'''Cancer Areas of Interest:''' Neoplasms (C88-D48).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Treatments at primary care level" and "Healthcare" > "Specialized outpatient treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/MP_Zubstat.pdf].

=== Database: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB) ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Monitoring and studying the incidence of diseases, injuries and poisonings that require hospital treatment.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

'''Available type of information:''' Number of hospitalizations due to illness; Gender; Year; Statistical region; Age group; Main diagnoses; ICD-10; Number of first and re-admissions to hospitals; Number of hospitalizations due to injuries and poisoning; Reason for hospital treatment; External cause; Number of deaths; Number of hospitalizations due to accidental injuries and poisoning; Number of hospitalizations due to intentional injuries and poisoning; Number of hospitalizations due to transport accidents with motor vehicles; Type of injury and poisoning; Number of episodes of hospital treatment due to illness, injury and poisoning; Type of treatment; Number of daily hospital treatments due to illnesses, injuries and poisoning; Number of episodes of prolonged hospital treatment due to diseases, injuries and poisoning; Number of episodes of extended hospital treatment due to illness, injury and poisoning; Rate of hospitalizations due to illness (per 1,000 inhabitants); Average duration of hospitalizations due to illness; Average duration of hospitalizations due to illness in days; Percentage of first and re-admissions to hospitals due to illness; Admission type; Proportion of hospitalizations due to illness; Average duration of hospitalization (in days) due to the most common diseases; Rate of hospitalizations (per 1,000 inhabitants) due to injuries and poisoning; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to (un)intentional injuries and poisonings; Rate of hospitalizations (first admissions per 1,000 inhabitants) due to transport accidents with motor vehicles, suicide and assault and legal intervention; Average duration of hospitalizations (in days) due to injuries and poisonings.

'''Source of Information:''' Reporters are all institutions that perform hospital activities in the Republic of Slovenia.

'''Data level:''' Patient level.

''' Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1965 onwards.

'''Cancer Areas of Interest:''' [[Cancer Areas of Interest: NIJZ Records on Diseases, Poisonings and Injuries on Hospitals (BOLOB)]].

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Healthcare" > "Hospital treatments". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6_6b_SBO_2016.pdf].

=== Database: NIJZ Healthcare Providers ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To serve as a comprehensive national resource for planning, monitoring, and implementing healthcare and health insurance systems, as well as a register for various groups of medical personnel.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Available type of information:''' Year; Age group; Gender; Employees; Professional groups; Statistical regions; Employees according to the list of occupations in the health sector; Type of contractor and legal status; MOH profession; Type of specialization; Specialization status; Indicators of employees in healthcare.

'''Source of Information:''' Providers are registered on the NIJZ, and private providers are managed by the Ministry of Health [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1997 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Healthcare Providers". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/docs/6d_Metodolo%C5%A1ka_pojasnila_struktura_BPI.pdf].

=== Database: NIJZ Hospital Beds ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' Provide information on hospital beds for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of data:''' Number of hospital beds, Hospital activity; Year; Region; Statistical region of hospitals.

'''Source of Information:''' Report on the work of the inpatient institution.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Hospital Beds". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__3%20Bolni%C5%A1ke%20postelje/Postelje1.px/].

=== Database: NIJZ Medical Devices ===

'''Sponsor, manager or home institution:''' Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information about medical devices for the purposes of research and policymaking.

'''Type of information:''' Data dictionary was not found. More metadata information [https://podatki.nijz.si/docs/6i_MET_POJASNILA_NAPRAVE.pdf].

'''Available type of information:''' Year; Devices in healthcare; Number and rate; Contractor type.

'''Source of Information:''' Administration of the Republic of Slovenia for Radiation Protection; Ministry of Health in cooperation with the Institute for Health Insurance of Slovenia.

'''Data level:''' Hospital level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2004 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Resources in Healthcare" > "Devices in Healthcare". Instructions to request data for restricted content [https://nijz.si/izvajalci/].

'''Information/Contact for data request:''' Contact information [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/NIJZ%20podatkovni%20portal__5%20Viri%20v%20zdravstvu__2%20Naprave%20v%20zdravstvu/Naprave.px/].

=== Database: ZZZS Number of treatments by healthcare provider ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on treatments provided by healthcare providers for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Days; Months; Year; Contractor; Health worker; Type of medical activity; Subtype of health activity; Number of treatments.

'''Source of Information:''' Unknown.

'''Data level:''' Provider and hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' October, 2022 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_izvedenih_obravnavah_po_zdravstvenem_delavcu/seznam_datotek_4136].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned Number of Teams ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned number of teams by individual providers and medical activities (VZD) for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Year; Name of the activity; Number of teams; Type of ownership; Regional contracting unit; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Type of medical activity; Subtype of health activity; Service code; 4th level of contractual activity; Description of the 4th level of contractual activity; NO. TIMOV.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2013-2020.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/podatki_o_dostopnosti_do_zdravstvenih_storitev/planirano_stevilo_timov/!ut/p/z1/04_Sj9CPykssy0xPLMnMz0vMAfIjo8zivf19DAz9DQwNA3yczA3MLILNPZy9gwzcDc31C7IdFQF0gdKM/].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Health Services ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the planned and implemented health services for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Activity; Regional contracting unit; Type of ownership; Type of medical activity; Subtype of health activity; Service code; Name of the activity; Plan; Rea; Index; Plan O,P; Rea O,P; Index O,P; ZZZS no. contractor; IVZ no. contractor; Name of the contractor.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital and regional level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 onwards.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available, for data before 2022 [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/ZbirniPlanRealizacija?openview&count=1000] and [https://partner.zzzs.si/wps/portal/portali/aizv/zdravstvene_storitve/plan_in_realizacija/podatki_o_planu_in_realizaciji_zdrav_storitve/seznam_datotek#Z7_KOL01O011PO860QNVUM8V00IU0] for data after 2022.

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].

=== Database: ZZZS Planned and Implemented Imaging Diagnostics for the Detection or Treatment of Cancer ===

'''Sponsor, manager or home institution:''' Zavod za zdravstveno zavarovanje Slovenije.

'''Primary purpose:''' To increase transparency and efficiency in the public health system by providing data on the imaging diagnostics for the detection or treatment of cancer for healthcare management, policy decisions, and to facilitate better citizen access to health services.

'''Type of information:''' Plan; Rea; Rea for Rak; Index; ZZZS no. contractor; IVZ no. contractor; Name of the contractor; Contractor nº.; Regional contracting unit; Type; Subtype; Service.

'''Source of Information:''' Unknown.

'''Data level:''' Hospital level.

'''Number of Records:''' Number of records can be counted in each spreadsheet.

'''Date Range:''' 2018 and 2019.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Publicly available [https://api.zzzs.si/zzzs/pao/izvajalci.nsf/slike?openview&count=1000].

'''Information/Contact for data request:''' Contact information [https://www.zzzs.si/zzzs-api/organizacijske-enote-zzzs-in-kontakti/].
</div>

== Registries ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Database: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Institute of Oncology Ljubljana [https://www.onko-i.si/eng/].

'''Primary purpose:''' To provide comprehensive historical and ongoing data on cancer incidence, prevalence, mortality, and survival in Slovenia, serving as a critical resource for evaluating the effectiveness of cancer prevention, diagnosis, treatment, and care, as well as for planning necessary resources for cancer control.

'''Type of information:''' Definitions of available cancer burden measures in the website [http://www.slora.si/en/definicije-kazalnikov-in-metod].

'''Source of Information:''' Source for incidence and prevalence is the Slovenian Cancer Registry (SCR) [https://www.onko-i.si/eng/crs]. Source for Mortality is the Nacionalni inštitut za javno zdravje (NIJZ) [http://www.nijz.si/].

'''Data level:''' Aggregated level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' N/A.

'''Date Range:''' 1961 onwards.

'''Cancer Areas of Interest:''' All malignant neoplasms and some additional benign and in situ entities.

'''Open data access:''' Partially publicly available [http://www.slora.si/en/]. Reports information [https://www.onko-i.si/eng/crs]. Instructions to request data for restricted content [https://www.onko-i.si/rrs].

'''Information/Contact for data request:''' Contact information [https://www.onko-i.si/eng/crs].

=== Database: Programme Svit Colorectal Cancer Screening ===

'''Sponsor, manager or home institution:''' Svit Programme; Nacionalni inštitut za javno zdravje.

'''Primary purpose:''' To provide information on the colonoscopy screenings performed by the Svit Programme in order to support research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Response in the Svit Programme; Gender; Region; Municipalities; Year.

'''Source of Information:''' Information collected by the Svit Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa].

'''Date Range:''' 2010 onwards [https://podatki.nijz.si/docs/Metodolo%C5%A1ka_pojasnila_SVIT.pdf].

'''Cancer Areas of Interest:''' Malignant neoplasm of the colon (C18); Malignant neoplasm of the rectosigmoid junction (C19); Malignant neoplasm of the rectum (C20); Benign neoplasm of colon, rectum, anus and anal canal (D12).

'''Open data access:''' Partially publicly available [https://podatki.nijz.si/pxweb/sl/NIJZ%20podatkovni%20portal/] under "Preventive Programs" > "National program for screening and early detection of precancerous changes and colon and rectal cancer (Svit)". Reports information [https://www.program-svit.si/za-uporabnike/o-nas/#porocila-o-izvajanju-programa]. Instructions to request data for restricted content [https://podatki.nijz.si/docs/Navodila_za_uporabnike_2022.pdf] in the "Contact section".

'''Information/Contact for data request:''' Contact information [https://www.program-svit.si/] at the end of the page.

=== Database: DORA Breast Cancer Screening ===

'''Sponsor, manager or home institution:''' DORA Program; Ljubljana Oncology Institute.

'''Primary purpose:''' To provide information on the breast screenings performed by the DORA Program in order to support research and policymaking.

'''Type of information:''' Data dictionary was not found.

'''Available type of information:''' Regional unit; Year; Age group; Screening round number; Number of women pictured; Number of women invited to mammography; Participation in the DORA program; Conference consensus; Number of women on additional treatments; Number of breast cancers detected; Number of screening centers in operation; Proportion of invited women who attended screening mammography; Proportion of women attending follow-up; Proportion of invasive cancers; Breast cancer detection rate (per 1,000 women screened); Screening-detected invasive cancers with negative lymph nodes; Proportion in screening of detected cancers that are stage II or higher; Proportion of detected invasive cancers that are <= 10 mm in the first round of screening; Proportion of invasive cancers < 15 mm detected in screening; Time interval between screening imaging and screening mammography result time; Interval between preoperative conference and date for surgery.

'''Source of Information:''' Information collected by the DORA Program.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://dora.onko-i.si/dokumenti].

'''Date Range:''' 2008 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of breast (C50).

'''Open data access:''' Partially publicly available [https://dora.onko-i.si/dokumenti]. Instructions to request data for restricted content [https://dora.onko-i.si/dokumenti] in "More Information".

'''Information/Contact for data request:''' Contact information [https://dora.onko-i.si/dokumenti] at the end of the page.

=== Database: Cervical Cancer Screening Registry ZORA ===

'''Sponsor, manager or home institution:''' ZORA Programme; Institute of Oncology Ljubljana, Slovenia.

'''Primary purpose:''' To reduce morbidity and mortality from cervical cancer in Slovenia.

'''Type of information:''' There is no data dictionary available.

'''Available type of information:''' Data on monitoring and evaluation:
- 3-year examination coverage by: year, age group, territorial unit, no. of examined women, no. of women with permanent residence, and transparency;
- Citology results: number of all screening smears satisfactory for evaluation and screening results stratified by calendar years;
- HPV triage test: number of all HPV triage test by calendar years and indication for the test;
- Histopatology: number of all invasive procedures on cervix by calendar years, procedure and histopathology results;
- High-grade cervical lesions: population data, no. of women with newly diagnosed HSIL/CIN2+ by calendar years and age groups;
- Cervical cancer: incidence (data from Slovenian Cancer Registry).

'''Source of Information:''' Information collected by the ZORA Programme.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Reports with the number of participants for each year [https://zora.onko-i.si/publikacije/letna-porocila].

'''Date Range:''' 2003 onwards.

'''Cancer Areas of Interest:''' Malignant neoplasm of cervix uteri (C53); Carcinoma in situ of cervix uteri (D06).

'''Open data access:''' It is not possible for researchers to access the ZORA programme database directly. It is possible to receive the data from the ZORA registry on request in accordance with their protocol for screening data access. Publicly available data [https://zora.onko-i.si/publikacije/kazalniki] and [https://zora.onko-i.si/en/monitoring-and-evaluation]. Reports information [https://zora.onko-i.si/publikacije/letna-porocila]. Instructions to request data for restricted content [https://zora.onko-i.si/program-zora/register-zora].

'''Information/Contact for data request:''' Contact information [https://zora.onko-i.si/pomozne-strani/kontakt].

== Clinical Practices Guidelines ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== Onko Guidelines ===

'''Sponsor, manager or home institution:''' Onkološki inštitut Ljubljana.

'''Primary purpose:''' To provide practical recommendations and improve the development, organization, and clinical practices on cancer.

'''Type of information:''' Recommendations care, treatments, palliative care, prevention, diagnoses, quality of life, follow up of various types of cancer.

'''Access to information:''' List of guidelines [https://www.onko-i.si/priporocila].
</div>

</div>

== Cancer-related Patient Associations and Resources ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">

=== Non-governmental organizations ===

'''Sponsor, manager or home institution:''' Various oncology institutions and societies in Slovenia.

'''Primary purpose:''' To support and empower cancer patients, raise awareness about cancer prevention and treatment, provide education and resources, advocate for patients' rights, improve the quality of life for those affected by cancer, and promote collaboration between various stakeholders in the field of oncology.

'''Access to information:''' Information [https://www.onko-i.si/za_javnost_in_bolnike/nevladne_organizacije].

=== ESMO Patient Guides ===

'''Sponsor, manager or home institution:''' European Society for Medical Oncology (ESMO).

'''Primary purpose:''' Provide patients, their relatives and caregivers guides to better understand complex medical information about different types of cancer.

'''Available guides:''' Cancer Treatment During the COVID-19 Pandemic; Side Effects Associated with Immunotherapy and Their Management; Personalized Medicine in Oncology; Life with Cancer; Breast Cancer; Ovarian Cancer; Cervical Cancer.

'''Type of information:''' Laymen-directed descriptions of specific cancers, their causes, diagnoses, treatment, screening, and side effects, among other relevant information for patients, their relatives and caregivers.

'''Access to information:''' Patient Guides [https://www.esmo.org/for-patients/patient-guides/patient-guides-by-language/cancer-patient-guides-in-croatian].

== Latest Policymaking Initiatives ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">
=== Reports: Slovenian Cancer Registry ===

'''Sponsor, manager or home institution:''' Register raka Republike Slovenije.

'''Primary purpose:''' To collect and process data on cancer incidence and patients' survival, being one of the oldest population-based cancer registries in Europe, and a member of the International Association of Cancer Registries and the European Network of Cancer Registries.

'''Type of information:''' The most common cancers; Cancer survive; Cancer incidence; Cancer prevalence and mortality; Number and proportions of patients who were operated on, treated with systemic treatment or irradiated; Number of patients who fell ill in and underwent surgery; Number of patients who received systemic treatment or therapy.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://www.onko-i.si/eng/crs].

=== Reports: ZORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; ZORA Program.

'''Primary purpose:''' To actively screen and reduce morbidity and mortality from cervical cancer in Slovenia, aiming for at least 70% coverage of women aged 20-64 through regular cervical smear examinations every three years.

'''Type of information:''' The percentage of women in the target group who are screened according to the program guidelines (screening); The number of new patients in a given year; (RMV incidence rate); Mortality due to RMV; The ratio between the number of newly detected precancerous and cancerous changes per year.

'''Data level:''' National level.

'''Access to information:''' Access Information [https://zora.onko-i.si/publikacije/letna-porocila].

=== Reports: DORA Program ===

'''Sponsor, manager or home institution:''' Ljubljana Oncology Institute; DORA Program.

'''Primary purpose:''' The early detection of breast cancer among women aged 50 to 69 in Slovenia, aiming to reduce breast cancer mortality by 25 to 30 percent through regular screening mammography and informed participation.

'''Type of information:''' Coverage and participation of the DORA Program; Number of breast screenings; Cancers detected in the screening program.

'''Data level:''' National level.

'''Access to information:''' Access Information > To access annual reports, go to DORA program reports [https://dora.onko-i.si/dokumenti].

=== Report: EU Country Cancer Profile 2023 ===

'''Sponsor, manager or home institution:''' OECD and European Commission.

'''Primary purpose:''' To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

'''Type of information:''' National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

'''Data level''': National level.

'''Access to information:''' Access Information [https://www.oecd-ilibrary.org/social-issues-migration-health/profil-drzav-o-stanju-na-podrocju-raka-slovenija-2023_fd31a438-sl].
</div>

== Quality of Life and Palliative Care Research ==

'''List of Articles:''' Quality of Life [https://pubmed.ncbi.nlm.nih.gov/?term=Quality+of+Life%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview] and Palliative Care [https://pubmed.ncbi.nlm.nih.gov/?term=Palliative+Care%5BMeSH%5D+AND+Slovenia%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview].
</div>

Latvia

2023-03-16T23:45:58Z

Akemi: /* Database: VSD Mortality Registry */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

In Latvia, the Nacionālais Veselības Dienests (NVD) is the provider of universal healthcare with the exception of dental care and most rehabilitation and physiotherapy. The system is financed through general taxation, and is managed by the Ministry of Health, who also manages the national health policy and the overall organization and functioning of the health system, whereas local government ensures the availability of healthcare services in the region. The NVD is primarily responsible for implementing state health policies, purchasing publicly funded health services, and ensuring healthcare service availability. All citizens have the right to a family doctor, and referral to specialists are offered at a discounted price.

The NVD and Slimību Profilakses un Kontroles Centrs (SPKC) are the main organizations responsible for national health information systems and databases such as electronic health records, claims data, cause of death, and cancer registries.

== [[Administrative or Claims Data]] ==

=== Database: Inpatient Healthcare ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Provide information about inpatient health care.

'''Type of information:''' The form used to acquire data from hospitals can be found [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma here] in Appendix 7.

'''Available type of information:''' Number of treated patients, proportion of treated patients, number of days spent by discharged patients (per 1000 inhabitants), average duration of treatment, patient mortality; filtered by diagnosis and age group. Other indicators include number of adult and children oncology beds used in the year, number of admitted patients, number of patients transferred within the hospital to and from other departments, and number of discharged patients.

'''Source of Information:''' Information is submitted by medical institutions using the form available in Appendix 7 of [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma this] document.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2011 onwards.

'''Cancer Areas of Interest:''' Tumors (C00-C48); Malignant neoplasms (including lymphoid and hematopoietic) (C00-C97).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Veselibas%20aprupe__StacionaraMediciniskaPalidziba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/veselibas-statistikas-nodala here].

== [[Registries]] ==

=== Database: VSD Cancer Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about cancer incidence and epidemiology.

'''Available type of information:''' Number of registered cancer by region, administrative territory, gender, age group, location and stage at time of diagnosis, among other metrics. More information about the variables can be found [https://statistika.spkc.gov.lv/Resources/PX/Databases/Health/Metadati/ONKO_Registra_metadati_lv.html here.]

'''Source of Information:''' Data collected from hospital data sources, population registries, cause of death databases, and registers for other diseases that contain oncological data.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2010 to 2019.

'''Cancer Areas of Interest:''' Malignant tumors (C00-C97); Lips, oral cavity, pharynx oropharynx (C00-C10); Esophagus (C15); Stomach (C16); Colon (C18); Colorectal part (C18-C21); Sigmoid-rectal junction, rectum (C19-C20); Anus (anus) and anal canal (canalis analis) (C21); Liver and intrahepatic bile ducts (C22); Liver and intrahepatic bile ducts (C22); Pancreas (C25); Varyncs (C32); Bronchi and lungs (C34); Bones, articular cartilage (C40-C41); Cutaneous melanoma (C43); Other malignant neoplasms of the skin (C44); Chest (C50); Female external genitalia, vagina (C51-C52); Cervix (C53); Body of uterus (C54-C55); Ovaries (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Brain (C71); Thyroid (C73); Imprecisely marked, secondary and non-localized (C76-C80); Hodgkin lymphoma (C81); Lymphoid, hematopoietic and related tissues (C81-C96); Non-Hodgkin lymphoma (C82-C85); Multiple myeloma and malignant plasma cell neoplasms (C90); Lympholeicosis (C91); Mielokeikoze (C92); Acute myeloblastic leukemia (C92.0); Chronic myelogenous leukemia (C92.1). Diagnoses staged according to TNM classification (C00-C69, C73-C80); Meninges, brain, cranial nerves and other parts of the central nervous system (C70-C72).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Saslimstiba_Slimibu_Izplatiba__Onkologija/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

=== Database: VSD Mortality Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about mortality incidence and epidemiology.

'''Available type of information:''' Cause of death by month, age group, COVID-19 vaccination status; cause of infant and child mortality by age group; potentially lost years of life by region, gender, and sex; as well as other information.

'''Source of Information:''' Data collected from death certificates and other populational databases.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies depending on the variable.

'''Cancer Areas of Interest:''' Tumors (C00-D48); Malignant tumors (C00-C97); Malignant tumors of lips and oral cavity (C00-C10); Malignant neoplasm of oesophagus (C15); Malignant tumor of stomach (C16); Malignant tumors of the colorectal part (C18-C21); Malignant tumor of colon (C18); Malignant neoplasm of sigmoid and rectal junction, malignant neoplasm of rectum (C19-C20; Malignant neoplasm of liver and intrahepatic biliary tract (C22); Malignant neoplasm of pancreas (C25); Malignant neoplasm of larynx (C32); malignant neoplasm of bronchi and lungs (C34); malignant tumors of bones and articular cartilage (C40-C41); Malignant neoplasm of skin (C43); Other malignant neoplasms of the skin (C44); Malignant neoplasms of mesothelial and soft tissue (C45-C49); Malignant neoplasm of breast; Malignant neoplasm of cervix (C53**); Malignant neoplasm of uterine body (C54**); Malignant tumor of ovary (C56**); Malignant neoplasm of prostate (C61***); Malignant neoplasm of kidney, excluding renal pelvis (C64); Malignant neoplasm of bladder (C67); Malignant tumor of brain (C71); Malignant neoplasm of thyroid gland (C73); Unsoecified and unlocalized malignant neoplasms (C76-C80); Malignant neoplasms of lymphoid, hematopoietic and related tissues (C81-C96); Hodgkin's disease (C81); Non-Hodgkin's lymphoma (C82-C85); Leukosis (C91-C95).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Mirstiba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Study of habits affecting the health of the population of Latvia, 2020 ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Collect information about the health habits of the adult population of Latvia (15-74 years old)

'''Type of information:''' Sociodemographic characteristics (gender, age, nationality, place of residence, marital status, number of children in the family, level of education, occupation, income level), health condition (self-assessment of health, frequency of visits to doctor, diagnosed diseases, individual disease symptoms and complaints, medication use, preventive health activity), health care and access to health care services and satisfaction with them, health habits (diet, physical activity, smoking, alcohol and drug use, compliance with traffic safety requirements) and efforts to change them, attitudes towards health, health and safety promotion.

'''Source of Information:''' Responses to the survey question conducted all over Latvia.

'''Data level:''' Respondent level.

'''Number of Records:''' 3,505.

'''Date Range:''' 2020. Similar surveys were also conducted every 2 years since 1998.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here]. Information on how to access the data can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/neinfekciju-slimibu-datu-analizes-un-petijumu-nodala here].

== [[Clinical Practices Guidelines]] ==

=== Compilation: SPKC Clinical Guidelines ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide guidelines on how to diagnose and treat several medical conditions.

'''Type of information:''' Clinical practices guidelines containing information about diagnosis, staging, treatment and follow-up for a number of diseases, including several types of cancer such as cervical, skin, prostate, breast and rectal cancer.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/klinisko-vadliniju-datu-baze here].

== [[Latest Policymaking Initiatives]] ==

=== Compilation: SPKC Reports ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide reports on the research conducted by the institute.

'''Type of information:''' Reports on smoking habits and analysis on public health data, which includes cancer data.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/petijumi-un-zinojumi here].

=== Report: Study on the Health Habits of School-Aged Children ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC); Riga Stradins University.

'''Primary purpose:''' Report on the results of the International Study on Health Behavior in School-Aged Children.

'''Type of Information:''' Information on school-aged children's health behavior, including smoking habits by gender, age, among other measures.

'''Level:''' National level.

'''Access to information:''' Reports from multiple years can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here].

Latvia

2023-03-16T23:19:31Z

Akemi: /* Database: VSD Cancer Registry */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

In Latvia, the Nacionālais Veselības Dienests (NVD) is the provider of universal healthcare with the exception of dental care and most rehabilitation and physiotherapy. The system is financed through general taxation, and is managed by the Ministry of Health, who also manages the national health policy and the overall organization and functioning of the health system, whereas local government ensures the availability of healthcare services in the region. The NVD is primarily responsible for implementing state health policies, purchasing publicly funded health services, and ensuring healthcare service availability. All citizens have the right to a family doctor, and referral to specialists are offered at a discounted price.

The NVD and Slimību Profilakses un Kontroles Centrs (SPKC) are the main organizations responsible for national health information systems and databases such as electronic health records, claims data, cause of death, and cancer registries.

== [[Administrative or Claims Data]] ==

=== Database: Inpatient Healthcare ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Provide information about inpatient health care.

'''Type of information:''' The form used to acquire data from hospitals can be found [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma here] in Appendix 7.

'''Available type of information:''' Number of treated patients, proportion of treated patients, number of days spent by discharged patients (per 1000 inhabitants), average duration of treatment, patient mortality; filtered by diagnosis and age group. Other indicators include number of adult and children oncology beds used in the year, number of admitted patients, number of patients transferred within the hospital to and from other departments, and number of discharged patients.

'''Source of Information:''' Information is submitted by medical institutions using the form available in Appendix 7 of [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma this] document.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2011 onwards.

'''Cancer Areas of Interest:''' Tumors (C00-C48); Malignant neoplasms (including lymphoid and hematopoietic) (C00-C97).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Veselibas%20aprupe__StacionaraMediciniskaPalidziba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/veselibas-statistikas-nodala here].

== [[Registries]] ==

=== Database: VSD Cancer Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about cancer incidence and epidemiology.

'''Available type of information:''' Number of registered cancer by region, administrative territory, gender, age group, location and stage at time of diagnosis, among other metrics. More information about the variables can be found [https://statistika.spkc.gov.lv/Resources/PX/Databases/Health/Metadati/ONKO_Registra_metadati_lv.html here.]

'''Source of Information:''' Data collected from hospital data sources, population registries, cause of death databases, and registers for other diseases that contain oncological data.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2010 to 2019.

'''Cancer Areas of Interest:''' Malignant tumors (C00-C97); Lips, oral cavity, pharynx oropharynx (C00-C10); Esophagus (C15); Stomach (C16); Colon (C18); Colorectal part (C18-C21); Sigmoid-rectal junction, rectum (C19-C20); Anus (anus) and anal canal (canalis analis) (C21); Liver and intrahepatic bile ducts (C22); Liver and intrahepatic bile ducts (C22); Pancreas (C25); Varyncs (C32); Bronchi and lungs (C34); Bones, articular cartilage (C40-C41); Cutaneous melanoma (C43); Other malignant neoplasms of the skin (C44); Chest (C50); Female external genitalia, vagina (C51-C52); Cervix (C53); Body of uterus (C54-C55); Ovaries (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Brain (C71); Thyroid (C73); Imprecisely marked, secondary and non-localized (C76-C80); Hodgkin lymphoma (C81); Lymphoid, hematopoietic and related tissues (C81-C96); Non-Hodgkin lymphoma (C82-C85); Multiple myeloma and malignant plasma cell neoplasms (C90); Lympholeicosis (C91); Mielokeikoze (C92); Acute myeloblastic leukemia (C92.0); Chronic myelogenous leukemia (C92.1). Diagnoses staged according to TNM classification (C00-C69, C73-C80); Meninges, brain, cranial nerves and other parts of the central nervous system (C70-C72).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Saslimstiba_Slimibu_Izplatiba__Onkologija/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

=== Database: VSD Mortality Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about mortality incidence and epidemiology.

'''Available type of information:''' Cause of death by month, age group, COVID-19 vaccination status; cause of infant and child mortality by age group; potentially lost years of life by region, gender, and sex; as well as other information.

'''Source of Information:''' Data collected from death certificates and other populational databases.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies depending on the variable.

'''Cancer Areas of Interest:''' C00-C97.

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Mirstiba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Study of habits affecting the health of the population of Latvia, 2020 ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Collect information about the health habits of the adult population of Latvia (15-74 years old)

'''Type of information:''' Sociodemographic characteristics (gender, age, nationality, place of residence, marital status, number of children in the family, level of education, occupation, income level), health condition (self-assessment of health, frequency of visits to doctor, diagnosed diseases, individual disease symptoms and complaints, medication use, preventive health activity), health care and access to health care services and satisfaction with them, health habits (diet, physical activity, smoking, alcohol and drug use, compliance with traffic safety requirements) and efforts to change them, attitudes towards health, health and safety promotion.

'''Source of Information:''' Responses to the survey question conducted all over Latvia.

'''Data level:''' Respondent level.

'''Number of Records:''' 3,505.

'''Date Range:''' 2020. Similar surveys were also conducted every 2 years since 1998.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here]. Information on how to access the data can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/neinfekciju-slimibu-datu-analizes-un-petijumu-nodala here].

== [[Clinical Practices Guidelines]] ==

=== Compilation: SPKC Clinical Guidelines ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide guidelines on how to diagnose and treat several medical conditions.

'''Type of information:''' Clinical practices guidelines containing information about diagnosis, staging, treatment and follow-up for a number of diseases, including several types of cancer such as cervical, skin, prostate, breast and rectal cancer.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/klinisko-vadliniju-datu-baze here].

== [[Latest Policymaking Initiatives]] ==

=== Compilation: SPKC Reports ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide reports on the research conducted by the institute.

'''Type of information:''' Reports on smoking habits and analysis on public health data, which includes cancer data.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/petijumi-un-zinojumi here].

=== Report: Study on the Health Habits of School-Aged Children ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC); Riga Stradins University.

'''Primary purpose:''' Report on the results of the International Study on Health Behavior in School-Aged Children.

'''Type of Information:''' Information on school-aged children's health behavior, including smoking habits by gender, age, among other measures.

'''Level:''' National level.

'''Access to information:''' Reports from multiple years can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here].

Latvia

2023-03-16T23:19:14Z

Akemi: /* Database: VSD Cancer Registry */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

In Latvia, the Nacionālais Veselības Dienests (NVD) is the provider of universal healthcare with the exception of dental care and most rehabilitation and physiotherapy. The system is financed through general taxation, and is managed by the Ministry of Health, who also manages the national health policy and the overall organization and functioning of the health system, whereas local government ensures the availability of healthcare services in the region. The NVD is primarily responsible for implementing state health policies, purchasing publicly funded health services, and ensuring healthcare service availability. All citizens have the right to a family doctor, and referral to specialists are offered at a discounted price.

The NVD and Slimību Profilakses un Kontroles Centrs (SPKC) are the main organizations responsible for national health information systems and databases such as electronic health records, claims data, cause of death, and cancer registries.

== [[Administrative or Claims Data]] ==

=== Database: Inpatient Healthcare ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Provide information about inpatient health care.

'''Type of information:''' The form used to acquire data from hospitals can be found [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma here] in Appendix 7.

'''Available type of information:''' Number of treated patients, proportion of treated patients, number of days spent by discharged patients (per 1000 inhabitants), average duration of treatment, patient mortality; filtered by diagnosis and age group. Other indicators include number of adult and children oncology beds used in the year, number of admitted patients, number of patients transferred within the hospital to and from other departments, and number of discharged patients.

'''Source of Information:''' Information is submitted by medical institutions using the form available in Appendix 7 of [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma this] document.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2011 onwards.

'''Cancer Areas of Interest:''' Tumors (C00-C48); Malignant neoplasms (including lymphoid and hematopoietic) (C00-C97).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Veselibas%20aprupe__StacionaraMediciniskaPalidziba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/veselibas-statistikas-nodala here].

== [[Registries]] ==

=== Database: VSD Cancer Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about cancer incidence and epidemiology.

'''Available type of information:''' Number of registered cancer by region, administrative territory, gender, age group, location and stage at time of diagnosis, among other metrics. More information about the variables can be found [https://statistika.spkc.gov.lv/Resources/PX/Databases/Health/Metadati/ONKO_Registra_metadati_lv.html here.]

'''Source of Information:''' Data collected from hospital data sources, population registries, cause of death databases, and registers for other diseases that contain oncological data.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2010 to 2019.

'''Cancer Areas of Interest:''' Malignant tumors (C00-C97); Lips, oral cavity, pharynx oropharynx (C00-C10); Esophagus (C15); Stomach (C16); Colon (C18); Colorectal part (C18-C21); Sigmoid-rectal junction, rectum (C19-C20); Anus (anus) and anal canal (canalis analis) (C21); Liver and intrahepatic bile ducts (C22); Liver and intrahepatic bile ducts (C22); Pancreas (C25); Varyncs (C32); Bronchi and lungs (C34); Bones, articular cartilage (C40-C41); Cutaneous melanoma (C43); Other malignant neoplasms of the skin (C44); Chest (C50); Female external genitalia, vagina (C51-C52); Cervix (C53); Body of uterus (C54-C55); Ovaries (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Brain (C71); Thyroid (C73); Imprecisely marked, secondary and non-localized (C76-C80); Hodgkin lymphoma (C81); Lymphoid, hematopoietic and related tissues (C81-C96); Non-Hodgkin lymphoma (C82-C85); Multiple myeloma and malignant plasma cell neoplasms (C90); Lympholeicosis (C91); Mielokeikoze (C92); Acute myeloblastic leukemia (C92.0); Chronic myelogenous leukemia (C92.1). Diagnoses staged according to TNM classification (C00-C69, C73-C80); Meninges, brain, cranial nerves and other parts of the central nervous system (C70-C72);

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Saslimstiba_Slimibu_Izplatiba__Onkologija/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

=== Database: VSD Mortality Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about mortality incidence and epidemiology.

'''Available type of information:''' Cause of death by month, age group, COVID-19 vaccination status; cause of infant and child mortality by age group; potentially lost years of life by region, gender, and sex; as well as other information.

'''Source of Information:''' Data collected from death certificates and other populational databases.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies depending on the variable.

'''Cancer Areas of Interest:''' C00-C97.

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Mirstiba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Study of habits affecting the health of the population of Latvia, 2020 ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Collect information about the health habits of the adult population of Latvia (15-74 years old)

'''Type of information:''' Sociodemographic characteristics (gender, age, nationality, place of residence, marital status, number of children in the family, level of education, occupation, income level), health condition (self-assessment of health, frequency of visits to doctor, diagnosed diseases, individual disease symptoms and complaints, medication use, preventive health activity), health care and access to health care services and satisfaction with them, health habits (diet, physical activity, smoking, alcohol and drug use, compliance with traffic safety requirements) and efforts to change them, attitudes towards health, health and safety promotion.

'''Source of Information:''' Responses to the survey question conducted all over Latvia.

'''Data level:''' Respondent level.

'''Number of Records:''' 3,505.

'''Date Range:''' 2020. Similar surveys were also conducted every 2 years since 1998.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here]. Information on how to access the data can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/neinfekciju-slimibu-datu-analizes-un-petijumu-nodala here].

== [[Clinical Practices Guidelines]] ==

=== Compilation: SPKC Clinical Guidelines ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide guidelines on how to diagnose and treat several medical conditions.

'''Type of information:''' Clinical practices guidelines containing information about diagnosis, staging, treatment and follow-up for a number of diseases, including several types of cancer such as cervical, skin, prostate, breast and rectal cancer.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/klinisko-vadliniju-datu-baze here].

== [[Latest Policymaking Initiatives]] ==

=== Compilation: SPKC Reports ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide reports on the research conducted by the institute.

'''Type of information:''' Reports on smoking habits and analysis on public health data, which includes cancer data.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/petijumi-un-zinojumi here].

=== Report: Study on the Health Habits of School-Aged Children ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC); Riga Stradins University.

'''Primary purpose:''' Report on the results of the International Study on Health Behavior in School-Aged Children.

'''Type of Information:''' Information on school-aged children's health behavior, including smoking habits by gender, age, among other measures.

'''Level:''' National level.

'''Access to information:''' Reports from multiple years can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here].

Latvia

2023-03-16T23:11:11Z

Akemi: /* Database: VSD Cancer Registry */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

In Latvia, the Nacionālais Veselības Dienests (NVD) is the provider of universal healthcare with the exception of dental care and most rehabilitation and physiotherapy. The system is financed through general taxation, and is managed by the Ministry of Health, who also manages the national health policy and the overall organization and functioning of the health system, whereas local government ensures the availability of healthcare services in the region. The NVD is primarily responsible for implementing state health policies, purchasing publicly funded health services, and ensuring healthcare service availability. All citizens have the right to a family doctor, and referral to specialists are offered at a discounted price.

The NVD and Slimību Profilakses un Kontroles Centrs (SPKC) are the main organizations responsible for national health information systems and databases such as electronic health records, claims data, cause of death, and cancer registries.

== [[Administrative or Claims Data]] ==

=== Database: Inpatient Healthcare ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Provide information about inpatient health care.

'''Type of information:''' The form used to acquire data from hospitals can be found [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma here] in Appendix 7.

'''Available type of information:''' Number of treated patients, proportion of treated patients, number of days spent by discharged patients (per 1000 inhabitants), average duration of treatment, patient mortality; filtered by diagnosis and age group. Other indicators include number of adult and children oncology beds used in the year, number of admitted patients, number of patients transferred within the hospital to and from other departments, and number of discharged patients.

'''Source of Information:''' Information is submitted by medical institutions using the form available in Appendix 7 of [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma this] document.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2011 onwards.

'''Cancer Areas of Interest:''' Tumors (C00-C48); Malignant neoplasms (including lymphoid and hematopoietic) (C00-C97).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Veselibas%20aprupe__StacionaraMediciniskaPalidziba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/veselibas-statistikas-nodala here].

== [[Registries]] ==

=== Database: VSD Cancer Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about cancer incidence and epidemiology.

'''Available type of information:''' Number of registered cancer by region, administrative territory, gender, age group, location and stage at time of diagnosis, among other metrics. More information about the variables can be found [https://statistika.spkc.gov.lv/Resources/PX/Databases/Health/Metadati/ONKO_Registra_metadati_lv.html here.]

'''Source of Information:''' Data collected from hospital data sources, population registries, cause of death databases, and registers for other diseases that contain oncological data.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2010 to 2019.

'''Cancer Areas of Interest:''' Malignant tumors (C00-C97); Lips, oral cavity, pharynx oropharynx (C00-C10); Esophagus (C15); Stomach (C16); Colon (C18); Colorectal part (C18-C21); Sigmoid-rectal junction, rectum (C19-C20); Anus (anus) and anal canal (canalis analis) (C21); Liver and intrahepatic bile ducts (C22); Liver and intrahepatic bile ducts (C22); Pancreas (C25); Varyncs (C32); Bronchi and lungs (C34); Bones, articular cartilage (C40-C41); Cutaneous melanoma (C43); Other malignant neoplasms of the skin (C44); Chest (C50); Female external genitalia, vagina (C51-C52); Cervix (C53); Body of uterus (C54-C55); Ovaries (C56); Prostate (C61); Testis (C62); Kidney (C64); Bladder (C67); Brain (C71); Thyroid (C73); Imprecisely marked, secondary and non-localized (C76-C80); Hodgkin lymphoma (C81); Lymphoid, hematopoietic and related tissues (C81-C96); Non-Hodgkin lymphoma (C82-C85); Multiple myeloma and malignant plasma cell neoplasms (C90); Lympholeicosis (C91); Mielokeikoze (C92).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Saslimstiba_Slimibu_Izplatiba__Onkologija/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

=== Database: VSD Mortality Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about mortality incidence and epidemiology.

'''Available type of information:''' Cause of death by month, age group, COVID-19 vaccination status; cause of infant and child mortality by age group; potentially lost years of life by region, gender, and sex; as well as other information.

'''Source of Information:''' Data collected from death certificates and other populational databases.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies depending on the variable.

'''Cancer Areas of Interest:''' C00-C97.

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Mirstiba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Study of habits affecting the health of the population of Latvia, 2020 ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Collect information about the health habits of the adult population of Latvia (15-74 years old)

'''Type of information:''' Sociodemographic characteristics (gender, age, nationality, place of residence, marital status, number of children in the family, level of education, occupation, income level), health condition (self-assessment of health, frequency of visits to doctor, diagnosed diseases, individual disease symptoms and complaints, medication use, preventive health activity), health care and access to health care services and satisfaction with them, health habits (diet, physical activity, smoking, alcohol and drug use, compliance with traffic safety requirements) and efforts to change them, attitudes towards health, health and safety promotion.

'''Source of Information:''' Responses to the survey question conducted all over Latvia.

'''Data level:''' Respondent level.

'''Number of Records:''' 3,505.

'''Date Range:''' 2020. Similar surveys were also conducted every 2 years since 1998.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here]. Information on how to access the data can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/neinfekciju-slimibu-datu-analizes-un-petijumu-nodala here].

== [[Clinical Practices Guidelines]] ==

=== Compilation: SPKC Clinical Guidelines ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide guidelines on how to diagnose and treat several medical conditions.

'''Type of information:''' Clinical practices guidelines containing information about diagnosis, staging, treatment and follow-up for a number of diseases, including several types of cancer such as cervical, skin, prostate, breast and rectal cancer.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/klinisko-vadliniju-datu-baze here].

== [[Latest Policymaking Initiatives]] ==

=== Compilation: SPKC Reports ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide reports on the research conducted by the institute.

'''Type of information:''' Reports on smoking habits and analysis on public health data, which includes cancer data.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/petijumi-un-zinojumi here].

=== Report: Study on the Health Habits of School-Aged Children ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC); Riga Stradins University.

'''Primary purpose:''' Report on the results of the International Study on Health Behavior in School-Aged Children.

'''Type of Information:''' Information on school-aged children's health behavior, including smoking habits by gender, age, among other measures.

'''Level:''' National level.

'''Access to information:''' Reports from multiple years can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here].

Latvia

2023-03-16T23:00:10Z

Akemi: /* Database: Inpatient Healthcare */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

In Latvia, the Nacionālais Veselības Dienests (NVD) is the provider of universal healthcare with the exception of dental care and most rehabilitation and physiotherapy. The system is financed through general taxation, and is managed by the Ministry of Health, who also manages the national health policy and the overall organization and functioning of the health system, whereas local government ensures the availability of healthcare services in the region. The NVD is primarily responsible for implementing state health policies, purchasing publicly funded health services, and ensuring healthcare service availability. All citizens have the right to a family doctor, and referral to specialists are offered at a discounted price.

The NVD and Slimību Profilakses un Kontroles Centrs (SPKC) are the main organizations responsible for national health information systems and databases such as electronic health records, claims data, cause of death, and cancer registries.

== [[Administrative or Claims Data]] ==

=== Database: Inpatient Healthcare ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Provide information about inpatient health care.

'''Type of information:''' The form used to acquire data from hospitals can be found [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma here] in Appendix 7.

'''Available type of information:''' Number of treated patients, proportion of treated patients, number of days spent by discharged patients (per 1000 inhabitants), average duration of treatment, patient mortality; filtered by diagnosis and age group. Other indicators include number of adult and children oncology beds used in the year, number of admitted patients, number of patients transferred within the hospital to and from other departments, and number of discharged patients.

'''Source of Information:''' Information is submitted by medical institutions using the form available in Appendix 7 of [https://likumi.lv/ta/id/186264-noteikumi-par-valsts-statistikas-parskatiem-veselibas-aprupes-joma this] document.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2011 onwards.

'''Cancer Areas of Interest:''' Tumors (C00-C48); Malignant neoplasms (including lymphoid and hematopoietic) (C00-C97).

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Veselibas%20aprupe__StacionaraMediciniskaPalidziba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/veselibas-statistikas-nodala here].

== [[Registries]] ==

=== Database: VSD Cancer Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about cancer incidence and epidemiology.

'''Available type of information:''' Number of registered cancer by region, administrative territory, gender, age group, location and stage at time of diagnosis, among other metrics. More information about the variables can be found [https://statistika.spkc.gov.lv/Resources/PX/Databases/Health/Metadati/ONKO_Registra_metadati_lv.html here.]

'''Source of Information:''' Data collected from hospital data sources, population registries, cause of death databases, and registers for other diseases that contain oncological data.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 2010 to 2019.

'''Cancer Areas of Interest:''' C00-C97.

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Saslimstiba_Slimibu_Izplatiba__Onkologija/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

=== Database: VSD Mortality Registry ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC)

'''Primary purpose:''' Provide information about mortality incidence and epidemiology.

'''Available type of information:''' Cause of death by month, age group, COVID-19 vaccination status; cause of infant and child mortality by age group; potentially lost years of life by region, gender, and sex; as well as other information.

'''Source of Information:''' Data collected from death certificates and other populational databases.

'''Data level:''' Patient level.

'''Available data level:''' Administrative territory, regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies depending on the variable.

'''Cancer Areas of Interest:''' C00-C97.

'''Open data access:''' Data is partially publicly available. Data can be found [https://statistika.spkc.gov.lv/pxweb/lv/Health/Health__Mirstiba/?tablelist=true here]. Information on how to access the full database can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/registru-parraudzibas-nodala here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Study of habits affecting the health of the population of Latvia, 2020 ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:''' Collect information about the health habits of the adult population of Latvia (15-74 years old)

'''Type of information:''' Sociodemographic characteristics (gender, age, nationality, place of residence, marital status, number of children in the family, level of education, occupation, income level), health condition (self-assessment of health, frequency of visits to doctor, diagnosed diseases, individual disease symptoms and complaints, medication use, preventive health activity), health care and access to health care services and satisfaction with them, health habits (diet, physical activity, smoking, alcohol and drug use, compliance with traffic safety requirements) and efforts to change them, attitudes towards health, health and safety promotion.

'''Source of Information:''' Responses to the survey question conducted all over Latvia.

'''Data level:''' Respondent level.

'''Number of Records:''' 3,505.

'''Date Range:''' 2020. Similar surveys were also conducted every 2 years since 1998.

'''Cancer Areas of Interest:''' All.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here]. Information on how to access the data can be found [https://www.spkc.gov.lv/lv/atlauja-izmantot-pacienta-datus-petijuma here].

'''Information/Contact for data request:''' Contact information can be found [https://www.spkc.gov.lv/lv/strukturvieniba/neinfekciju-slimibu-datu-analizes-un-petijumu-nodala here].

== [[Clinical Practices Guidelines]] ==

=== Compilation: SPKC Clinical Guidelines ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide guidelines on how to diagnose and treat several medical conditions.

'''Type of information:''' Clinical practices guidelines containing information about diagnosis, staging, treatment and follow-up for a number of diseases, including several types of cancer such as cervical, skin, prostate, breast and rectal cancer.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/klinisko-vadliniju-datu-baze here].

== [[Latest Policymaking Initiatives]] ==

=== Compilation: SPKC Reports ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC).

'''Primary purpose:'''' Provide reports on the research conducted by the institute.

'''Type of information:''' Reports on smoking habits and analysis on public health data, which includes cancer data.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.spkc.gov.lv/lv/petijumi-un-zinojumi here].

=== Report: Study on the Health Habits of School-Aged Children ===

'''Sponsor, manager or home institution:''' Slimību Profilakses un Kontroles Centrs (SPKC); Riga Stradins University.

'''Primary purpose:''' Report on the results of the International Study on Health Behavior in School-Aged Children.

'''Type of Information:''' Information on school-aged children's health behavior, including smoking habits by gender, age, among other measures.

'''Level:''' National level.

'''Access to information:''' Reports from multiple years can be found [https://www.spkc.gov.lv/lv/veselibu-ietekmejoso-paradumu-petijumi here].

Ireland

2023-03-15T18:02:05Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution:''' National Cancer Control Programme (NCCP); Health Service Executive; National Cancer Drug Management Programme; Primary Care Reimbursement Service (PCRS).

'''Primary purpose:''' To organize and oversee the utilization of cancer medications nationally.

'''Type of information:''' Patient demographics, usage of cancer drugs, and expenditures on cancer medications; Other patients' information comprises their name, date of birth, gender, address, and contact details (if provided), as well as their PPS or medical card number or long-term illness card number (if available). Information about the data contained in the database can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

'''Source of Information:''' The hospital personnel enters the necessary data into an internet-based system supervised and run by PCRS. PCRS provides NCCP with anonymous and combined reports generated from the system. The data is gathered every month.

'''Data level:''' Patient level.

'''Number of Records:''' 21,030 claims submitted – 2021; 17,019 claims submitted – 2020; 15,640 claims submitted - 2019.

'''Date Range:''' Data collection started in September 2012, and reporting procedure began in April 2013.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Data is not publicly available. Information on how to access the full database can be found [https://www.hse.ie/eng/staff/pcrs/pcrs-publications/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

'''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-15T14:13:55Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution:''' National Cancer Control Programme (NCCP); Health Service Executive; National Cancer Drug Management Programme; Primary Care Reimbursement Service (PCRS).

'''Primary purpose:''' To organize and oversee the utilization of cancer medications nationally.

'''Type of information:''' Patient demographics, usage of cancer drugs, and expenditures on cancer medications; Other patients' information comprises their name, date of birth, gender, address, and contact details (if provided), as well as their PPS or medical card number or long-term illness card number (if available). Information about the data contained in the database can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

'''Source of Information:''' The hospital personnel enters the necessary data into an internet-based system supervised and run by PCRS. PCRS provides NCCP with anonymous and combined reports generated from the system. The data is gathered every month.

'''Data level:''' Patient level.

'''Number of Records:''' 21,030 claims submitted – 2021; 17,019 claims submitted – 2020; 15,640 claims submitted - 2019.

'''Date Range:''' Data collection started in September 2012, and reporting procedure began in April 2013.

'''Cancer Areas of Interest:''' Unknown.

'''Open data access:''' Data is not publicly available.

'''Information/Contact for data request:''' Contact information can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-15T11:17:49Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution:''' National Cancer Control Programme (NCCP); Health Service Executive; National Cancer Drug Management Programme.

'''Primary purpose:''' To organize and oversee the utilization of cancer medications nationally.

'''Type of information:''' Patient demographics, usage of cancer drugs, and expenditures on cancer medications; Other patients' information comprises their name, date of birth, gender, address, and contact details (if provided), as well as their PPS or medical card number or long-term illness card number (if available). Information about the data contained in the database can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

'''Source of Information:''' The hospital personnel enters the necessary data into an internet-based system supervised and run by Primary Care Reimbursement Service (PCRS). PCRS provides NCCP with anonymous and combined reports generated from the system. The data is gathered every month.

'''Data level:''' Public hospitals offering cancer drug services and participating in the National Cancer Drug Management Programme.

'''Number of Records:''' 21,030 claims submitted – 2021; 17,019 claims submitted – 2020; 15,640 claims submitted - 2019.

'''Date Range:''' Data collection started in September 2012, and reporting procedure began in April 2013.

'''Cancer Areas of Interest:''' Data is not publicly available.

'''Open data access:''' Data is not publicly available.

'''Information/Contact for data request:''' Contact information can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-14T19:58:27Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution:''' National Cancer Control Programme (NCCP); Health Service Executive; National Cancer Drug Management Programme.

'''Primary purpose:''' To organize and oversee the utilization of cancer medications nationally.

'''Type of information:''' Patient demographics, usage of cancer drugs, and expenditures on cancer medications; Other patients' information comprises their name, date of birth, gender, address, and contact details (if provided), as well as their PPS or medical card number or long-term illness card number (if available).

'''Source of Information:''' The hospital personnel enters the necessary data into an internet-based system supervised and run by Primary Care Reimbursement Service (PCRS). PCRS provides NCCP with anonymous and combined reports generated from the system. The data is gathered every month.

'''Data level:''' Public hospitals offering cancer drug services and participating in the National Cancer Drug Management Programme.

'''Number of Records:''' 21,030 claims submitted – 2021; 17,019 claims submitted – 2020; 15,640 claims submitted - 2019.

'''Date Range:''' Data collection started in September 2012, and reporting procedure began in April 2013.

'''Cancer Areas of Interest:''' Data is not publicly available.

'''Open data access:''' Data is not publicly available.

'''Information/Contact for data request:''' Contact information can be found [https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-14T18:02:55Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution:''' National Cancer Control Programme (NCCP); Health Service Executive; National Cancer Drug Management Programme.

'''Primary purpose:''' To organize and oversee the utilization of cancer medications nationally.

'''Type of information:''' Patient demographics, usage of cancer drugs, and expenditures on cancer medications; Other patients' information comprises their name, date of birth, gender, address, and contact details (if provided), as well as their PPS or medical card number or long-term illness card number (if available).

'''Source of Information:''' The hospital personnel enters the necessary data into an internet-based system supervised and run by Primary Care Reimbursement Service (PCRS). PCRS provides NCCP with anonymous and combined reports generated from the system. The data is gathered every month.

'''Data level:''' Public hospitals offering cancer drug services and participating in the National Cancer Drug Management Programme.

'''Number of Records:''' 21,030 claims submitted – 2021; 17,019 claims submitted – 2020; 15,640 claims submitted - 2019.

'''Date Range:''' Data collection started in September 2012, and reporting procedure began in April 2013.

'''Cancer Areas of Interest:'''

'''Open data access:''' Data is not publicly available.

'''Information/Contact for data request:''' Contact information can be found here (https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system).

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-14T17:05:47Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution:'''National Cancer Control Programme (NCCP), Health Service Executive.

'''Primary purpose:'''

'''Type of information:'''

'''Source of Information:'''

'''Data level:'''

'''Number of Records:'''

'''Date Range:'''

'''Cancer Areas of Interest:'''

'''Open data access:'''

'''Information/Contact for data request:'''

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-14T17:05:24Z

Akemi: /* Database: National Oncology Drugs Management System */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

=== Database: National Oncology Drugs Management System ===

[https://www.hiqa.ie/areas-we-work/health-information/data-collections/national-oncology-drugs-management-system [1]]

'''Sponsor, manager or home institution: National Cancer Control Programme (NCCP), Health Service Executive.

'''Primary purpose:'''

'''Type of information:'''

'''Source of Information:'''

'''Data level:'''

'''Number of Records:'''

'''Date Range:'''

'''Cancer Areas of Interest:'''

'''Open data access:'''

'''Information/Contact for data request:'''

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-13T15:12:02Z

Akemi: /* Compilation: Department of Health Databases (CSO) */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of oesophagus; Malignant neoplasm of stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus and lung; Malignant neoplasm of larynx; Cancer.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filterng tool.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-12T19:04:07Z

Akemi: /* Compilation: Department of Health Databases (CSO) */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of uterus; Other benign/uncertain neoplasms;

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filterng tool.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-10T18:00:30Z

Akemi: /* Database: Vital Statistics */

== [[Cancer Centers]] ==

== [[Healthcare System]] ==

Ireland provides free access to healthcare for all its residents, but it is not universal healthcare. The Health Service Executive (HSE) provides health and social care services through its own hospitals and Community Health Organization structures, as well as through the servuces of general practicians, pharmacists and other health professionals. They're also responsible for large voluntary providers of social care and voluntary hospitals.

The availability and costs of public health services depend on an individual's circumstances. While some services, such as maternal and infant care and immunizations, are free of charge to everyone, access to other services varies. The population is divided into two categories. Category 1, which makes up about 36% of the population, consists of people with medical cards primarily given to those with low incomes. These cards provide access to certain services at no cost, including GP and hospital care, as well as reduced costs for prescription medicines. Category 2, comprising 64% of the population, does not have medical cards, but some households may qualify for a GP visit card (10%), providing free GP care but requiring payments for other public system services. GP visit cards are also given to children under 6 and adults over 70. Additionally, approximately 46% of the population has private health insurance, with another 20% not covered by a medical card, a GP visit card, or private health insurance.

The main statistical body of Ireland is the Central Statistics Office (CSO), who compiles data from a variety of other research and statistical bodies such as the Health Research Institute, Department of Health, and Health Service Executive, on top of producing their own health information with surveys and reports.

== [[Administrative or Claims Data]] ==

=== Compilation: Department of Health Databases (CSO) ===

'''Sponsor, manager or home institution:''' Department of Health; Central Statistics Office.

'''Primary purpose:''' Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.

'''Type of information:''' Data on discharge, diagnostics and procedures for inpatients.

'''Source of Information:''' Unknown.

'''Data level:''' National level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies.

'''Cancer Areas of Interest:''' Varies.

'''Open data access:''' Data is oublicly available. Databases can be found [https://data.cso.ie/# here] through the filterng tool.

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/aboutus/contactus/ here].

== [[Registries]] ==

=== Database: National Cancer Registry ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:''' Collect and disseminate cancer incidence statistics.

'''Type of information:''' Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].

'''Available type of information:''' Cancer incidence and survival filtered by age, type of cancer, sex, and region.

'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

'''Data level:''' Patient level.

'''Available data level:''' Regional and national level.

'''Number of Records:''' Unknown.

'''Date Range:''' 1994 onwards.

'''Cancer Areas of Interest:''' All invasive, minus NMSC (C00-C43, C45-C96); lip (C00); base of tongue (C01); mouth and pharynx (C01-C14); other tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other mouth (C06); parotid (C07); other salivary (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); pyriform (C12); hypopharynx (C13); other mouth/pharynx (C14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); colorectal (C18-C21); rectosigmoid (C19); rectum (C20); anus (C21); liver (C22); gallbladder (C23); other biliary (C24); pancreas (C25); other digestive (C26); nasal cavity/middle ear (C30); sinuses (C31); larynx (C32); trachea (C33); lung (C34); thymus (C37); mediastinum (C38); other chest (C39); bones, joints of limbs (C40); bones, joints head and trunk (C41); melanoma skin (C43); non-melanoma skin (NMSC) (C44); mesothelioma (C45); kaposi's sarcoma (C46); peripheral nerves (C47); peritoneum (C48); connective tissues (C49); breast (C50); vulva (C51); vagina (C52); cervix (C53); corpus uteri (C54); uterus NOS (C55); ovary (C56); other female genital (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other male genital (C63); kidney (C64); renal pelvis (C65); ureter (C66); bladder (C67); other urinary (C68); eye (C69); meninges (C70); brain (C71); spinal cord (C72); thyroid (C73); adrenal (C74); other endocrine (C75); III-defined site (C76); unknown primary site (C80); Hodgkin's lymphoma (C81); lymphoma (total) (C81-C85); follicular non-Hodgkin's lymphoma (C82); all non-Hodgkin's lymphoma (C82-C85); diffuse non-Hodgkin's lymphoma (C83); peripheral and cutaneous T cell lymphoma (C84); other and unspecified NHL (C85); malignant immunoproliferative disease (C88); multiple mieloma (C90); lymphoid leukaemia (C91); leukaemia (total) (C91-C95); myeloid leukaemia (C92); monocytic leukaemia (C93); other specified leukaemia (C94); unspecified leukaemia (C95); other lymphoid and haematopoietic (C96); all non-invasive cancers (D00-D48); in-situ: melanoma (D03); in-situ: carcinoma of skin (D04); in situ: breast (D05); in situ cervix (D06); benign: brain & CNS (D32-D33); uncertain: brain & CNS (D42-D43); All cancers except NMSC (C00-C097 ex 044); biliary (C23-C24); bladder cancer invasive (C67); bladder cancer invasive/in situ/uncertain (C67/D09.0/D41.4); bone & cartilage cancer (C40-C41); cervical (C53); chronic myeloid leukaemia (C92.1); chronic myeloproliferative disease (M9960-9964/3); hypopharyngeal (C12-C13); kidney & related cancer (C64-C66 & C68); melanoma of choroid (C69.3); multiple melanoma (C90.0); myelodysplastic syndromes (M-9980-9989/3); oral & pharyngeal cancer ex salivary glands (C01-C06 & C09-C13); oral cancer (C03-C06); oropharyngeal cancer (C09-C10); ovary & uterine adnexal cancer (C56, C57.0-57.7); penis & related cancers (C60 & C63); pleural (C38.4 & C45); polycythaemia vera (M-9950/3); rectal/anal cancer (C19-C21); salivary gland cancer (C08-C09); soft tissue cancer (C47 & C49); vaginal/vulvar & related cancer (C51-C52, C57.8-C57.9).

'''Open data access:''' Data is partially publicly available. Data can be found [https://www.ncri.ie/data/incidence-statistics here]. Information on how to access data can be found [https://www.ncri.ie/data/data-request here].

'''Information/Contact for data request:''' Contact information can be found [https://www.ncri.ie/contact here].

=== Database: Vital Statistics ===

'''Sponsor, manager or home institution:''' Central Statistics Office (CSO)

'''Primary purpose:''' Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.

'''Type of information:''' Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of infant, Date of birth of parents, Marital status of mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.

'''Available type of information:''' Births by age of mother and sex of child, area of residence, region, within and outside of marriage/civil partnership, average age of mother, within and outside of marriage/civil partnership, birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of mother. Deaths occurring by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.

'''Source of Information:''' Methodology for each section of the Vital Statistics database can be found [https://www.cso.ie/en/methods/birthsdeathsandmarriages/ here].

'''Data level:''' Patient level.

'''Available data level:''' Regional, national level.

'''Number of Records:''' Unknown.

'''Date Range:''' Varies for each section and variable.

'''Cancer Areas of Interest:''' Neoplasm (C00-D48); malignant neoplasm (C00-C99); malignant neoplasm of lip (C00); base of tongue (C01); other and unspecified parts of tongue (C02); gum (C03); floor of mouth (C04); palate (C05); other and unspecified parts of mouth (C06); parotid gland (C07); other and unspecified major salivary glands (C08); tonsil (C09); oropharynx (C10); nasopharynx (C11); piriform sinus (C12); hypopharynx (C13); other and ill-defined sites in the lip; oral cavity and pharynx (C14); esophagus (C15); stomach (C16); small intestine (C17); colon (C18); rectosigmoid junction (C19); rectum (C20); anus and anal canal (C21); liver and intrahepatic bile ducts (C21); gallbladder (C22); other and unspecified parts of biliary tract (C24); pancreas (C25); other and ill-defined digestive organs (C26); nasal cavity and middle ear (C30); accessory sinuses (C31); larynx (C32); trachea (C33); bronchus and lung (C34); thymus (C37); heart; mediastinum and pleura (C38); other and ill-defined sites in the respiratory system and intrathoracic organs (C39); bone and articular cartilage of limbs (C40); bone and articular cartilage of other and unspecified sites (C41); melanoma of skin (C41); other malignant melanoma of skin (C43); mesothelioma (C45); kaposi sarcoma (C46); peripheral nerves and autonomic nervous system (C47); retroperitoneum and peritoneum (C48); other connective and soft tissue (C49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); uterus; part unspecified (C55); ovary (C56); other and unspecified female genital organs (C57); placenta (C58); penis (C60); prostate (C61); testis (C62); other and unspecified male genital organs (C63); kidney; except renal pelvis (C64); renal pelvis (C65); ureter (C66); bladder (C67); other and unspecified urinary organs (C68); eye and adnexa (C69); meninges (C70); brain (C71); spinal cord; cranial nerves and other parts of central nervous (C72); thyroid gland (C73); adrenal gland (C74); other endocrine glands and related structures (C75); other and ill-defined sites (C76); secondary and unspecified malignant neoplasm of lymph nodes (C77); secondary malignant neoplasm of respiratory and digestive organs (C78); secondary malignant neoplasm of other and unspecified sites (C79); malignant neoplasm of other and unspecified sites (C79); malignant naoplasm without specification of site (C80); Hodgkin lymphoma (C81); follicular lymphoma (C82); non-follicular lymphoma (C83); mature T/NK-cell lymphomas (C85); other specified types of T/NK-cell lymphoma (C86). malignant immunoproliferative diseases (C88); multiple myeloma and malignant plasma cell neoplasms (C90); lymphoid leukaemia (C91); myeloid leukaemia (C92); monocytic leukaemia (C93); other leukemia of specified cell type (C94); leukaemia of unspecified cell type (C95); other and unspecified malignant neoplasm of lymphoid; haematopoietic and related issue (C96); malignant neoplasms of independent (primary) multiple sites (C97); carcinoma in situ of oral cavity; oesophagus and stomach (D00); carcinoma in situ of other and unspecified digestive organs (D01); carcinoma in situ of middle ear and respiratory system (D02); melanoma in situ (D03); carcinoma in situ of skin (D04); carcinoma in situ of breast (D05); carcinoma in situ of cervix uteri (D06); carcinoma in situ of other and unspecified genital organs (D07); carcinoma in situ of other and unspecified sites (D09); benign neoplasm of mouth and pharynx (D10); benign neoplasm of major salivary glands (D11); benign neoplasm of colon; rectum; anus and anal canal (D12); benign neoplasm of other and ill-defined parts of digestive system (D13); benign neoplasm of middle ear and respiratory system (D14); benign neoplasm of other and unspecified intrathoracic organs (D15); benign neoplasm of bone and articular cartilage (D16); lipomatous neoplasm (D17); hemangioma and lymphangioma, any site (D18); benign neoplasm of mesothelial tissue (D19); benign neoplasm of soft tissue of retroperitoneum and peritoneum (D20); other benign neoplasmsof connective and other soft tissue (D21); melanocytic naevi (D22); other benign neoplasm of skin (D23); benign neoplasm of breast (D24); leiomyomna of uterus (D25); other benign neoplasm of ovary (D27); benign neoplasm of other and unspecified female genital organs (D28); benign neoplasm of male genital organs (D29); benign neoplasm of urinary organs (D30); benign neoplasm of ete and adnexa (D31); benign neoplasm of meninges (D32); benign neoplasm of brain and other parts of central nervous system (D33); benign neoplasm of thyroid gland (D34); benign neoplasm of other and unspecified endocrine glands (D35); benign neoplasm of other and unspecified sites (D36); neoplasm of uncertain or unknown behavior of oral cavity and digestive organs (D37); neoplasm of uncertain or unknown behavior of middle ear and respiratory and intrathoracic organs (D38); neoplasm of uncertain or unknown behavior of female genital organs (D39); neoplasm of uncertain or unknown behavior of male genital organs (D40); neoplasm of uncertain or unknown behavior of urinary organs (D41); neoplasm of uncertain or unknown behavior of meninges (D42); neoplasm of uncertain or unknown behavior of brain and central nervous system (D37); neoplasm of uncertain or unknown behavior of endocrine glands (D44); other neoplasm of uncertain or unknown behaviour of other and unspecified sites (D48).

'''Open data access:''' Data is partially publicly available. Data can be accessed [https://www.cso.ie/en/releasesandpublications/ep/p-vsar/vitalstatisticsannualreport2020/data/ here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here]. Reports can be found [https://www.cso.ie/en/statistics/birthsdeathsandmarriages/archive/publicationarchive2021/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-vsys/vitalstatisticsyearlysummary2021/ here].

== [[Databases for Clinical Trials, Surveys and Biobanks]] ==

=== Survey: Irish Health Survey 2019 ===

'''Sponsor, manager or home institution:''' Central Statistics Office.

'''Primary purpose:''' Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.

'''Type of information:''' Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions can be found [https://www.cso.ie/en/media/csoie/releasespublications/documents/ep/irishhealthsurveymainresults/2019/IHS_questionnaire.pdf here].

'''Source of Information:''' Responses to the survey questions conducted all over Ireland.

'''Data level:''' Patient level.

'''Available data level: ''' Regional, national level.

'''Number of Records:''' 7,621 respondents.

'''Date Range:''' 2019. Survey was also conducted in 2015.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is partially publicly available. Publicly available data can be accessed [https://data.cso.ie/product/IHS here]. Information on how to access full database can be found [https://www.cso.ie/en/aboutus/lgdp/csodatapolicies/dataforresearchers/ here].

'''Information/Contact for data request:''' Contact information can be found [https://www.cso.ie/en/releasesandpublications/ep/p-ihsmr/irishhealthsurvey2019-mainresults/contactdetails/ here].

=== Survey: Healthy Ireland Survey ===

'''Sponsor, manager or home institution:''' Department of Health, Statistics and Analytics Unit.

'''Primary purpose:''' Obtain information about the health status and behavior of the irish population.

'''Type of information:''' Survey responses about topics including general health, smoking, alcohol, weight management, health service utilisation, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/241132/074cd4af-0103-4e6d-b65c-a4fa23afd83d.pdf#page=null here].

'''Available type of information:''' Survey reports for all the years.

'''Source of Information:''' Responses from survey questionnaire.

'''Data level:''' Patient level.

'''Available data level:''' National level.

'''Number of Records:''' Around 7,500 respondents.

'''Date Range:''' 2014-2022.

'''Cancer Areas of Interest:''' All cancer areas related to smoking.

'''Open data access:''' Data is not publicly available. Reports can be found [https://www.gov.ie/en/collection/231c02-healthy-ireland-survey-wave/ here]. Information on how to access microdata can be found [https://www.gov.ie/pdf/?file=https://assets.gov.ie/7633/091ed7356f04477889be53cf38f5841f.pdf#page=null here].

'''Information/Contact for data request:''' Contact information was not found.

== [[Electronic Health Records]] ==

== [[Clinical Practices Guidelines]] ==

== [[Latest Policymaking Initiatives]] ==

=== Compilation: Cancer Statistics Reports ===

'''Sponsor, manager or home institution:''' National Cancer Registry of Ireland.

'''Primary purpose:'''' Provide reports about cancer data collected by the institute.

'''Type of information:''' Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.

''''Level:''' National level.

'''Access to information:''' Information can be found [https://www.ncri.ie/publications here].

== [[Cancer-related Patient Associations and Resources]] ==

Ireland

2023-03-09T19:57:05Z

Akemi: /* Database: National Cancer Registry */

Ireland

2023-03-09T19:56:29Z

Akemi: /* Database: National Cancer Registry */