Sweden: Difference between revisions

From Beacon
 
(136 intermediate revisions by 5 users not shown)
Line 1: Line 1:
== [[Cancer Centers]] ==
<span style="display:none">forresearchers</span>
<span style="display:none">forpatients</span>
<span style="display:none">forproviders</span>
<span style="display:none">forpolicymakers</span>
<span style="display:none">swedencountry</span>
[https://wiki.beaconcancer.org/index.php?title=Cancer_Centers Go back to Cancer Centers list.]


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


Sweden provides universal healthcare for all its residents, and emergency care covers any patient from the EEA/EU. The system is mostly funded by local taxes, but responsibility for the healthcare system is divided between national, regional, and municipal level. The national government is responsible for regulation and supervision, counties are responsible for providing and financing healthcare products and services, and municipalities are responsible for other healthcare services such as elderly care, school and home healthcare, among others.
[[hasCancerCenter::Karolinska Institute and University Hospital]]


Most healthcare needs are covered by the universal healthcare system, with only 15% of health spending being out-of-pocket. Those are mostly for services that are not fully covered by the system such as pharmaceuticals, dental care and other outpatient care.
[[hasCancerCenter::Skåne University Hospital Cancer Centre]]


It is important to note that reporting for the 110 regional registries covering a variety of diseases is not mandatory.
[[hasCancerCenter::Sahlgrenska University Hospital]]


== [[Administrative or Claims Data]] ==
[[hasCancerCenter::Uppsala University Hospital]]


=== Database: Socialstyrelsen. National Patient Register ===
[[hasCancerCenter::University Hospital of Umeå - Norrland University Hospital]]


'''Sponsor, manager or home institution:''' Socialstyrelsen.
</div>


'''Primary purpose:''' The patient register serves multiple purposes. One of its main functions is to track the health development of the population over an extended period. In doing so, it helps to improve the possibilities of preventing and treating diseases. Additionally, the patient register contributes to the overall development of healthcare by providing valuable data and insights. It also enables healthcare providers to monitor the quality of their operations and identify areas where improvements may be needed.
== [[hasHealthcareSystem::Healthcare_System_(Sweden)|Healthcare System]] ==


'''Type of information:''' Full list of variables can be found [https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/dokument-webb/ovrigt/register-variabelforteckning-patientregistret.xlsx here].
== Administrative or Claims Data ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">


'''Source of Information:''' Healthcare providers must submit patient information to the patient register monthly, including hospital code and medical area. Data is submitted via a reporting portal or sftp service.
=== [[hasDatabase::Database:_Socialstyrelsen_National_Patient_Register_(Sweden)|Database: Socialstyrelsen National Patient Register]] ===


'''Data level:''' Patient level.
=== [[hasDatabase::Registry:_Cancer_incidence_and_mortality_in_the_southern_healthcare_region_-_Healthcare_costs_per_case_(Sweden)|Database: Cancer incidence and mortality in the southern healthcare region - Healthcare costs per case]] ===


'''Number of Records:''' Unknown.
</div>


'''Date Range:''' 1964 onwards.
== Registries ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">


'''Cancer Areas of Interest:''' All
=== [[hasDatabase::Database:_Socialstyrelsen_Cancer_Registry_(Sweden)|Database: Socialstyrelsen Cancer Registry]] ===


'''Open data access:''' Data is not publicly available. Information on how to access data can be found
=== [[hasDatabase::Database:_Socialstyrelsen_Cause_of_Death_Registry_(Sweden)|Database: Socialstyrelsen Cause of Death Registry]] ===


'''Information/Contact for data request:''' Contact information can be found [https://www.socialstyrelsen.se/statistik-och-data/register/patientregistret/ here].
=== [[hasDatabase::Database:_Medicines_Registry_(Sweden)|Database: Medicines Registry]] ===


== [[Registries]] ==
=== [[hasDatabase::Database:_National_Quality_Register_for_Cervical_Cancer_Prevention_(Sweden)|Database: National Quality Register for Cervical Cancer Prevention]] ===


=== Database: Socialstyrelsen Cancer Registry ===
=== [[hasDatabase::Database: Swedish National Data Service (SND) Compilation (Sweden)|Database: Swedish National Data Service (SND) Compilation]] ===


'''Sponsor, manager or home institution:''' Socialstyrelsen.
== Databases for Clinical Trials, Surveys and Biobanks ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">


'''Primary purpose:'''  To map the occurrence and change of cancer diseases over time.
=== [[hasBiobank::Biobank:_Biobank_for_individuals_with_prostate_cancer_-_Biobank_for_prostate_cancer_controls_(Sweden)|Biobank: Biobank for individuals with prostate cancer - Biobank for prostate cancer controls]] ===


'''Type of information:''' A full list of variables can be found [https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/dokument-webb/statistik/register-variabelforteckning-cancerregistret.xls here].
=== [[hasDatabase::Survey:_Malmö_Diet_Cancer_(Sweden)|Survey: Malmö Diet Cancer]] ===


''' Available type of information''': Number of new cases, cases per 100,000, and incidence sorted by age, sex, cancer area and year.
=== [[hasDatabase::Survey:_Family_Studies_of_Childhood_Cancer_-_Genealogy_Database_(Sweden)|Survey: Family Studies of Childhood Cancer - Genealogy Database]] ===


'''Source of Information:''' The data is sent from hospitals to six regional cancer centers for coding and registration. Once the material has been verified, it is then transmitted to the National Board of Health and Welfare to become part of the cancer registry. The registry is updated annually.
=== [[hasDatabase::Survey:_Cohort_of_Swedish_men_(COSM)_-_2019_health_(Sweden)|Survey: Cohort of Swedish men (COSM) - 2019 health]] ===


'''Data level:''' Patient level.
=== [[hasDatabase::Survey:_Swedish_mammography_cohort_(SMC)_2019_lifestyle_(Sweden)|Survey: Swedish mammography cohort (SMC) 2019 lifestyle]] ===


'''Available data level:''' Regional and national level.
=== [[hasDatabase::Biobank/Database:_Breast_cancer_-_a_metastasis_study_(Sweden)|Biobank/Database: Breast cancer - a metastasis study]] ===
</div>


'''Number of Records:''' 60,000 cases registered every year [https://www.healthinformationportal.eu/health-information-sources/swedish-national-cancer-register [1]]
== Clinical Practices Guidelines ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">


'''Date Range:''' 1970 onwards.
=== [[hasClinicalGuidelines::The_National_Clinical_Cancer_Care_Guidelines_(Sweden)|Guidelines: The National Clinical Cancer Care Guidelines]] ===


'''Cancer Areas of Interest:''' All.
=== [[hasClinicalGuidelines::Compilation:_National_Board_of_Health_and_Welfare_Guidelines_(Sweden)|Guidelines: National Board of Health and Welfare Guidelines]] ===


'''Open data access:''' Data is partially publicly available. The data can be accessed [https://sdb.socialstyrelsen.se/if_can/val.aspx here]. Information on how to access the full database can be found [https://bestalladata.socialstyrelsen.se/ here].
</div>


'''Information/Contact for data request:''' Contact information can be found [https://www.socialstyrelsen.se/statistik-och-data/register/cancerregistret/ here].
== Latest Policymaking Initiatives ==
<div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide">


=== Database: Socialstyrelsen Cause of Death Registry ===
=== [[hasReport::Reports:_Socialstyrelsen_(Sweden)|Reports: Socialstyrelsen]] ===


'''Sponsor, manager or home institution:''' Socialstyrelsen.
=== [[hasReport::Report:_Cancer_Fonden_(Sweden)|Report: Cancer Fonden]] ===


'''Primary purpose:''' To describe the causes of death and track mortality trends in Sweden.
=== [[hasReport::Reports:_Swedish_Palliative_Registry_(Sweden)|Reports: Swedish Palliative Registry]] ===


'''Type of information:''' Age at death in years at the time of death, year of death, clinical or forensic autopsy information, examination before death in hospital information, external autopsy information, date of death, place of death, multiple causes of death according to the ICD, including ULORSAK and KAP19/KAP17 combinations, date of any eventual operation, whether surgery was performed within 4 weeks before death, underlying cause of death according to ICD, among other information. A full list of variables can be found [https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/dokument-webb/statistik/register-dodsorsaksregistret-variabelforteckning.xls here].
=== [[hasReport::Report:_EU_Country_Cancer_Profile_2023_(Sweden)|Report: EU Country Cancer Profile 2023]] ===


'''Available type of information:''' Number of deaths, deaths rates and deaths by 100,000 people sorted by diagnosis, age, sex and region.
=== [[hasReport::Report:_EU_Country_Cancer_Profile_2025_(Sweden)|Report: EU Country Cancer Profile 2025]] ===


'''Source of Information:''' The death certificates are sent by doctors to the Tax Agency or the Police, and then are sent to the Socialstyrelsen.
</div>


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


'''Available data level:''' Regional and national level.
=== [[hasPatientAssociation::Patient Association: Swedish Breast Cancer Association (Europa Donna Sweden) (Sweden)|Patient Association: Swedish Breast Cancer Association (Europa Donna Sweden)]] ===


'''Number of Records:'''
=== [[hasPatientGuides::Patient Guides: ESMO Patient Guides Compilation (Sweden)|Patient Guides: ESMO Patient Guides Compilation]] ===


'''Date Range:''' 1969 onwards.
=== [[hasPatientResource::Self-help_Group:_Swedish_Network_Against_Cancer_(Sweden)|Self-help Group: Swedish Network Against Cancer]] ===
</div>


'''Cancer Areas of Interest:''' All.
== [[hasQoLandPalliativeCareResearch::Quality_of_Life_and_Palliative_Care_Research_(Sweden)|Quality of Life and Palliative Care Research]] ==


'''Open data access:''' Data is partially publicly available. Data from 1969 to 1996 can be accessed [https://www.statistikdatabasen.scb.se/goto/sv/ssd/DodaOrsak here] and data from 1997 onwards can be accessed [https://sdb.socialstyrelsen.se/if_dor/val.aspx here]. Information on how to access the full database can be found [https://bestalladata.socialstyrelsen.se/ here].
__NOTOC__
 
<span style="display:none">hasCancerCenter::Karolinska Institute and University Hospital</span>
'''Information/Contact for data request:''' Contact information can be found [https://www.socialstyrelsen.se/statistik-och-data/register/dodsorsaksregistret/ here].
<span style="display:none">hasCancerCenter::Skåne University Hospital Cancer Centre</span>
 
<span style="display:none">hasCancerCenter::Sahlgrenska University Hospital</span>
== [[Databases for Clinical Trials, Surveys and Biobanks]] ==
<span style="display:none">hasCancerCenter::Uppsala University Hospital</span>
 
<span style="display:none">hasCancerCenter::University Hospital of Umeå - Norrland University Hospital</span>
== [[Electronic Health Records]] ==
<span style="display:none">hasHealthcareSystem::Healthcare_System_(Sweden)|Healthcare System</span>
 
<span style="display:none">hasDatabase::Database:_Socialstyrelsen_National_Patient_Register_(Sweden)|Database: Socialstyrelsen National Patient Register</span>
== [[Clinical Practices Guidelines]] ==
<span style="display:none">hasDatabase::Registry:_Cancer_incidence_and_mortality_in_the_southern_healthcare_region_-_Healthcare_costs_per_case_(Sweden)|Registry: Cancer incidence and mortality in the southern healthcare region - Healthcare costs per case</span>
 
<span style="display:none">hasDatabase::Database:_Socialstyrelsen_Cancer_Registry_(Sweden)|Database: Socialstyrelsen Cancer Registry</span>
== [[Latest Policymaking Initiatives]] ==
<span style="display:none">hasDatabase::Database:_Socialstyrelsen_Cause_of_Death_Registry_(Sweden)|Database: Socialstyrelsen Cause of Death Registry</span>
 
<span style="display:none">hasDatabase::Database:_Medicines_Registry_(Sweden)|Database: Medicines Registry</span>
== [[Cancer-related Patient Associations and Resources]] ==
<span style="display:none">hasDatabase::Database:_National_Quality_Register_for_Cervical_Cancer_Prevention_(Sweden)|Database: National Quality Register for Cervical Cancer Prevention</span>
<span style="display:none">hasDatabase::Compilation:_Swedish_National_Data_Service_(SND)_(Sweden)|Compilation: Swedish National Data Service (SND)</span>
<span style="display:none">hasBiobank::Biobank:_Biobank_for_individuals_with_prostate_cancer_-_Biobank_for_prostate_cancer_controls_(Sweden)|Biobank: Biobank for individuals with prostate cancer - Biobank for prostate cancer controls</span>
<span style="display:none">hasDatabase::Survey:_Malmö_Diet_Cancer_(Sweden)|Survey: Malmö Diet Cancer</span>
<span style="display:none">hasDatabase::Survey:_Family_Studies_of_Childhood_Cancer_-_Genealogy_Database_(Sweden)|Survey: Family Studies of Childhood Cancer - Genealogy Database</span>
<span style="display:none">hasDatabase::Survey:_Cohort_of_Swedish_men_(COSM)_-_2019_health_(Sweden)|Survey: Cohort of Swedish men (COSM) - 2019 health</span>
<span style="display:none">hasDatabase::Survey:_Swedish_mammography_cohort_(SMC)_2019_lifestyle_(Sweden)|Survey: Swedish mammography cohort (SMC) 2019 lifestyle</span>
<span style="display:none">hasDatabase::Biobank/Database:_Breast_cancer_-_a_metastasis_study_(Sweden)|Biobank/Database: Breast cancer - a metastasis study</span>
<span style="display:none">hasClinicalGuidelines::The_National_Clinical_Cancer_Care_Guidelines_(Sweden)|The National Clinical Cancer Care Guidelines</span>
<span style="display:none">hasClinicalGuidelines::Compilation:_National_Board_of_Health_and_Welfare_Guidelines_(Sweden)|Compilation: National Board of Health and Welfare Guidelines</span>
<span style="display:none">hasReport::Reports:_Socialstyrelsen_(Sweden)|Reports: Socialstyrelsen</span>
<span style="display:none">hasReport::Report:_Cancer_Fonden_(Sweden)|Report: Cancer Fonden</span>
<span style="display:none">hasReport::Reports:_Swedish_Palliative_Registry_(Sweden)|Reports: Swedish Palliative Registry</span>
<span style="display:none">hasReport::Report:_EU_Country_Cancer_Profile_2023_(Sweden)|Report: EU Country Cancer Profile 2023</span>
<span style="display:none">hasPatientGuides::Compilation:_ESMO_Patient_Guides_(Sweden)|Compilation: ESMO Patient Guides</span>
<span style="display:none">hasQoLandPalliativeCareResearch::Quality_of_Life_and_Palliative_Care_Research_(Sweden)|Quality of Life and Palliative Care Research</span>
<span style="display:none">hasDatabase::Registry:_Cancer_incidence_and_mortality_in_the_southern_healthcare_region_-_Healthcare_costs_per_case_(Sweden)|Database: Cancer incidence and mortality in the southern healthcare region - Healthcare costs per case</span>
<span style="display:none">hasClinicalGuidelines::The_National_Clinical_Cancer_Care_Guidelines_(Sweden)|Guidelines: The National Clinical Cancer Care Guidelines</span>
<span style="display:none">hasClinicalGuidelines::Compilation:_National_Board_of_Health_and_Welfare_Guidelines_(Sweden)|Guidelines: National Board of Health and Welfare Guidelines</span>
<span style="display:none">hasDatabase::Database: Swedish National Data Service (SND) Compilation (Sweden)|Database: Swedish National Data Service (SND) Compilation</span>
<span style="display:none">hasPatientGuides::Patient Guides: ESMO Patient Guides Compilation (Sweden)|Patient Guides: ESMO Patient Guides Compilation</span>
<span style="display:none">hasCancerType::C00-D48: All neoplasms</span>
<span style="display:none">hasCancerType::C00-C97: All cancer types</span>
<span style="display:none">hasCancerType::C00-C14: Mouth/throat cancers</span>
<span style="display:none">hasCancerType::C15-C26: Digestive system cancers</span>
<span style="display:none">hasCancerType::C30-C39: Lung/chest cancers</span>
<span style="display:none">hasCancerType::C40-C41: Bone cancers</span>
<span style="display:none">hasCancerType::C43-C44: Skin cancers/melanoma</span>
<span style="display:none">hasCancerType::C45-C49: Soft tissue cancer</span>
<span style="display:none">hasCancerType::C50: Breast cancer</span>
<span style="display:none">hasCancerType::C51-C58: Female genitalia cancers</span>
<span style="display:none">hasCancerType::C60-C63: Male genitalia cancer</span>
<span style="display:none">hasCancerType::C64-C68: Urinary system cancers</span>
<span style="display:none">hasCancerType::C69-C72: Eye and brain cancer</span>
<span style="display:none">hasCancerType::C73-C75: Thyroid and other gland cancers</span>
<span style="display:none">hasCancerType::C76-C80: Cancers of unknown or unspecified areas</span>
<span style="display:none">hasCancerType::C81-C96: Cancers of the blood and immune system</span>
<span style="display:none">hasCancerType::C97-C97: Cancers in multiple locations from the start</span>
<span style="display:none">hasCancerType::D00-D09: Early-stage cancers not yet spread</span>
<span style="display:none">hasCancerType::D10-D36: Benign tumour</span>
<span style="display:none">hasCancerType::D37-D48: Growths of uncertain nature</span>
<span style="display:none">hasCancerType::unknown</span>

Latest revision as of 13:47, 23 January 2026

forresearchers forpatients forproviders forpolicymakers swedencountry Go back to Cancer Centers list.

Cancer Centers[edit | edit source]

Healthcare System[edit | edit source]

Administrative or Claims Data[edit | edit source]

Registries[edit | edit source]

Database: Socialstyrelsen Cancer Registry[edit | edit source]

Database: Socialstyrelsen Cause of Death Registry[edit | edit source]

Database: Medicines Registry[edit | edit source]

Database: National Quality Register for Cervical Cancer Prevention[edit | edit source]

Database: Swedish National Data Service (SND) Compilation[edit | edit source]

Databases for Clinical Trials, Surveys and Biobanks[edit | edit source]

Clinical Practices Guidelines[edit | edit source]

Latest Policymaking Initiatives[edit | edit source]

Cancer-related Patient Associations and Resources[edit | edit source]

Quality of Life and Palliative Care Research[edit | edit source]

hasCancerCenter::Karolinska Institute and University Hospital hasCancerCenter::Skåne University Hospital Cancer Centre hasCancerCenter::Sahlgrenska University Hospital hasCancerCenter::Uppsala University Hospital hasCancerCenter::University Hospital of Umeå - Norrland University Hospital hasHealthcareSystem::Healthcare_System_(Sweden)|Healthcare System hasDatabase::Database:_Socialstyrelsen_National_Patient_Register_(Sweden)|Database: Socialstyrelsen National Patient Register hasDatabase::Registry:_Cancer_incidence_and_mortality_in_the_southern_healthcare_region_-_Healthcare_costs_per_case_(Sweden)|Registry: Cancer incidence and mortality in the southern healthcare region - Healthcare costs per case hasDatabase::Database:_Socialstyrelsen_Cancer_Registry_(Sweden)|Database: Socialstyrelsen Cancer Registry hasDatabase::Database:_Socialstyrelsen_Cause_of_Death_Registry_(Sweden)|Database: Socialstyrelsen Cause of Death Registry hasDatabase::Database:_Medicines_Registry_(Sweden)|Database: Medicines Registry hasDatabase::Database:_National_Quality_Register_for_Cervical_Cancer_Prevention_(Sweden)|Database: National Quality Register for Cervical Cancer Prevention hasDatabase::Compilation:_Swedish_National_Data_Service_(SND)_(Sweden)|Compilation: Swedish National Data Service (SND) hasBiobank::Biobank:_Biobank_for_individuals_with_prostate_cancer_-_Biobank_for_prostate_cancer_controls_(Sweden)|Biobank: Biobank for individuals with prostate cancer - Biobank for prostate cancer controls hasDatabase::Survey:_Malmö_Diet_Cancer_(Sweden)|Survey: Malmö Diet Cancer hasDatabase::Survey:_Family_Studies_of_Childhood_Cancer_-_Genealogy_Database_(Sweden)|Survey: Family Studies of Childhood Cancer - Genealogy Database hasDatabase::Survey:_Cohort_of_Swedish_men_(COSM)_-_2019_health_(Sweden)|Survey: Cohort of Swedish men (COSM) - 2019 health hasDatabase::Survey:_Swedish_mammography_cohort_(SMC)_2019_lifestyle_(Sweden)|Survey: Swedish mammography cohort (SMC) 2019 lifestyle hasDatabase::Biobank/Database:_Breast_cancer_-_a_metastasis_study_(Sweden)|Biobank/Database: Breast cancer - a metastasis study hasClinicalGuidelines::The_National_Clinical_Cancer_Care_Guidelines_(Sweden)|The National Clinical Cancer Care Guidelines hasClinicalGuidelines::Compilation:_National_Board_of_Health_and_Welfare_Guidelines_(Sweden)|Compilation: National Board of Health and Welfare Guidelines hasReport::Reports:_Socialstyrelsen_(Sweden)|Reports: Socialstyrelsen hasReport::Report:_Cancer_Fonden_(Sweden)|Report: Cancer Fonden hasReport::Reports:_Swedish_Palliative_Registry_(Sweden)|Reports: Swedish Palliative Registry hasReport::Report:_EU_Country_Cancer_Profile_2023_(Sweden)|Report: EU Country Cancer Profile 2023 hasPatientGuides::Compilation:_ESMO_Patient_Guides_(Sweden)|Compilation: ESMO Patient Guides hasQoLandPalliativeCareResearch::Quality_of_Life_and_Palliative_Care_Research_(Sweden)|Quality of Life and Palliative Care Research hasDatabase::Registry:_Cancer_incidence_and_mortality_in_the_southern_healthcare_region_-_Healthcare_costs_per_case_(Sweden)|Database: Cancer incidence and mortality in the southern healthcare region - Healthcare costs per case hasClinicalGuidelines::The_National_Clinical_Cancer_Care_Guidelines_(Sweden)|Guidelines: The National Clinical Cancer Care Guidelines hasClinicalGuidelines::Compilation:_National_Board_of_Health_and_Welfare_Guidelines_(Sweden)|Guidelines: National Board of Health and Welfare Guidelines hasDatabase::Database: Swedish National Data Service (SND) Compilation (Sweden)|Database: Swedish National Data Service (SND) Compilation hasPatientGuides::Patient Guides: ESMO Patient Guides Compilation (Sweden)|Patient Guides: ESMO Patient Guides Compilation hasCancerType::C00-D48: All neoplasms hasCancerType::C00-C97: All cancer types hasCancerType::C00-C14: Mouth/throat cancers hasCancerType::C15-C26: Digestive system cancers hasCancerType::C30-C39: Lung/chest cancers hasCancerType::C40-C41: Bone cancers hasCancerType::C43-C44: Skin cancers/melanoma hasCancerType::C45-C49: Soft tissue cancer hasCancerType::C50: Breast cancer hasCancerType::C51-C58: Female genitalia cancers hasCancerType::C60-C63: Male genitalia cancer hasCancerType::C64-C68: Urinary system cancers hasCancerType::C69-C72: Eye and brain cancer hasCancerType::C73-C75: Thyroid and other gland cancers hasCancerType::C76-C80: Cancers of unknown or unspecified areas hasCancerType::C81-C96: Cancers of the blood and immune system hasCancerType::C97-C97: Cancers in multiple locations from the start hasCancerType::D00-D09: Early-stage cancers not yet spread hasCancerType::D10-D36: Benign tumour hasCancerType::D37-D48: Growths of uncertain nature hasCancerType::unknown