Ireland: Difference between revisions

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'''Primary purpose:''' Collect and disseminate cancer incidence statistics.
'''Primary purpose:''' Collect and disseminate cancer incidence statistics.


'''Type of information:''' Cancer Incidence: Filter by sex, age, county, region, year and childhood cancer; Cancer Survival: Filter by year, sex, region, stage and age. Data dictionary can be found [https://www.ncri.ie/data/data-we-collect here].
'''Type of information:''' Address 1; Address 2; Address 3; Address 4; Address 5; Address Id; Admission Type; Age At Incidence; Also Known As; Approximate Treatment Date; Care of Address; Clinical M; Clinical N; Clinical T; Clinical Tumour Size; Closed Date; Comment Date; Comment Id; Consultant; County Id; Date of Birth; Date of Death; Date of Incidence; Date of Metastasis; Date of Notification; Date of Recurrence; Date of Treatment; Date of Tumour Marker; Do Not Contact; Firstname; Firstname 2; Grade; Histology Lab Number; Hospital of Source of Notification; Hospital of Treatment; House Name; House Number; ICD-10-O-3; Incidence Report Ready; Maiden Name; Main Address; Management Id; Marker Id; Marker Type; Marker Value; Medical Oncology Code; Medical Oncology Comment; Medical Records Number; Metastasis Id; Metastasis Topography; Method Of Diagnosis; Method Of Presentation; Morphology Code ICD-O3; Morphology Code ICD-O3 Group; Morphology Description Id; Mortality Status; Neo Adjuvant; Node Evaluation; Nodes Positive; Nodes Sampled; Notes; Pathological M; Pathological N; Pathological T; Pathological Tumour Size; Pathology Lab Id; Pathology Subtext; Patient Cervical Check Report Status; Patient Date of CervicalCheck Report; Patient Id; Postcode; PPS Number; Procedure Category; Procedure Group; Purpose of Treatment; Sex; Side; Source Id; Source Of Notification Id; Staging Site Topography; Surname; Treatment Coding System; Treatment Id; Treatment Site Topography; Tumour Cervical Check Report Status; Tumour Date of Cervical Check Report; Tumour Death Certificate Only; Tumour Id; Tumour Status; Tumour Survival; Tumour Topography. 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.
'''Available type of information:''' Cancer incidence and survival by year, age, stage, type of cancer, sex, county, region and childhood cancer.


'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.
'''Source of Information:''' Data is collected from hospital medical records by nurses acting as hospital liasons. Death information is collected using death certificates.

Revision as of 11:45, 27 March 2023

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. Age-Standardised Data for Principal Procedure; Age-Standardised Morbidity Rate for Principal Procedures; In-Patient and Daycase Principal Procedures and Average Length of Hospital Stay; Hospital Discharges of In-Patients, Daycases and Length of Stay (All Procedures); Hospital Discharges of In-Patients, Daycases and Length of Stay (National Data); All Procedures; In-Patient and Daycase Procedures and Average Length of Hospital Stay; Age-Standardised Discharge Data for Principal Diagnosis; Age-Standardised Data for Principal Diagnosis; Age-Standardised Morbidity Rate for All Procedures; Age-Standardised Discharge Data for Principal Procedures; Age-Standardised Discharge Data for All Procedures; Age-Standardised Discharge Rate for All Procedures; Age-Standardised Morbidity Rate for All Procedures; Age-Standardised Hospital Discharge Data for Selected Principal Procedures; Age-Standardised Discharge Data for Selected Principal Procedures; Age-Standardised Morbidity Data for Selected Principal Procedures; Age Specific Data for Selected Procedures; In-Patient and Daycase with Principal Diagnosis and Average Length of Hospital Stay; In-Patient Hospital Discharge Data for Principal Diagnoses; Hospital Discharge Data for Principal Diagnoses; Hospital Discharge Rates for Principal Diagnoses; In-Patient Hospital Discharge Data for Principal Procedures; Hospital Discharge Data for Principal Procedures; Hospital Discharges of In-Patients, Daycases and Length of Stay (All Diagnoses); Age-Standardised Data for Selected Principal Procedures; Age-Standardised Data for Principal Procedures; Potential Years of Life Lost; Selected Principal Procedures; Age-Standardised Data for All Procedures. Filtered by year, age group, sex, type of procedure, principal and additional procedure, selected principal procedure, area, ISHMT, county and HSE region, cause of death.

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 publicly available. Databases can be found 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 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: Address 1; Address 2; Address 3; Address 4; Address 5; Address Id; Admission Type; Age At Incidence; Also Known As; Approximate Treatment Date; Care of Address; Clinical M; Clinical N; Clinical T; Clinical Tumour Size; Closed Date; Comment Date; Comment Id; Consultant; County Id; Date of Birth; Date of Death; Date of Incidence; Date of Metastasis; Date of Notification; Date of Recurrence; Date of Treatment; Date of Tumour Marker; Do Not Contact; Firstname; Firstname 2; Grade; Histology Lab Number; Hospital of Source of Notification; Hospital of Treatment; House Name; House Number; ICD-10-O-3; Incidence Report Ready; Maiden Name; Main Address; Management Id; Marker Id; Marker Type; Marker Value; Medical Oncology Code; Medical Oncology Comment; Medical Records Number; Metastasis Id; Metastasis Topography; Method Of Diagnosis; Method Of Presentation; Morphology Code ICD-O3; Morphology Code ICD-O3 Group; Morphology Description Id; Mortality Status; Neo Adjuvant; Node Evaluation; Nodes Positive; Nodes Sampled; Notes; Pathological M; Pathological N; Pathological T; Pathological Tumour Size; Pathology Lab Id; Pathology Subtext; Patient Cervical Check Report Status; Patient Date of CervicalCheck Report; Patient Id; Postcode; PPS Number; Procedure Category; Procedure Group; Purpose of Treatment; Sex; Side; Source Id; Source Of Notification Id; Staging Site Topography; Surname; Treatment Coding System; Treatment Id; Treatment Site Topography; Tumour Cervical Check Report Status; Tumour Date of Cervical Check Report; Tumour Death Certificate Only; Tumour Id; Tumour Status; Tumour Survival; Tumour Topography. Data dictionary can be found here.

Available type of information: Cancer incidence and survival by year, age, stage, type of cancer, sex, county, region and childhood cancer.

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 here. Information on how to access data can be found here.

Information/Contact for data request: Contact information can be found 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 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 here. Information on how to access full database can be found here. Reports can be found here.

Information/Contact for data request: Contact information can be found here.

Database: 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 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 here.

Information/Contact for data request: Contact information can be found 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 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 here. Information on how to access full database can be found here.

Information/Contact for data request: Contact information can be found 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 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 here. Information on how to access microdata can be found 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 here.

Cancer-related Patient Associations and Resources