Denmark
Cancer Centers
Healthcare System
Denmark citizens have access to universal healthcare funded by income tax. The national government regulates, plans and assesses healthcare. Regional government provides most of the healthcare services, while municipalities are responsible nursing homes, home care, school health services, disease prevention, rehabilitation and non-specialized long-term care. Citizens must register with a general practitioner who will refer patients to other specializations according to need. The CPR-number is an unique electronic personal identifier of Denmark permanent residents and configures an important tool to connect data across registries and databases.
Administrative or Claims Data
The Danish National Patient Registry (DNPR)
Sponsor, manager or home institution: The Danish Health Data Authority.
Type of information: Patient data (CPR number, and area of residence), admission data (hospital and department codes, admission type, patient contact type, referral information, contact reason, and dates of admission and discharge), diagnosis (primary, secondary, referral, temporary, procedure-related, and supplementary), treatments information (surgery, anesthesia, intensive care, and othersincluding cancer treatments), and examinations.
Source of information: Collected from monthly mandatory public and private hospitals' reports.
Data level: Patient level.
Number of records: Nationwide coverage since 1978. Considering the period between 1977–2012, the DNPR registered 8,085,603 persons, accounting for 7,268,857 inpatient, 5,953,405 outpatient, and 5,097,300 emergency department contacts.
Cancer areas of interest: The list can be checked in this website
Date range: 1977 onwards.
Data access: Restricted access. To be able to request data, read the instructions presented here.
Information/contact for data request: Contact information.
The National Health Insurance Service Register (SSR)
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Presents information about services that are supported by public health insurance (patient data: CPR number, age, sex, place of residence, etc.; provider data: specialty, service number, practice office, etc.; service data: type, date, fee triggered from the Public Health Insurance). It is possible to acquire more details about each patient context by linking with the National Patient Register and the Cause of Death Register data.
Source of information: Reports from the providers that is sent to The Danish Health Data Agency.
Data level: Patient level.
Date range: 1990 onwards.
Data access: Access is restricted and can be obtained by applying for data via the research service at the research service at the [www.ssi.dk Statens Seruminstitut].
Information/contact for data request: Contact information.
The Medicines Statistics Register (LSR)
Sponsor, manager or home institution: The Danish Medicines Agency.
Type of information: Information on prescriptions dispensed to residents of long-termcare institutions.
Source of information: Reports from pharmacies, hospital pharmacies, the Statens Serum Institut and Denmark's Food Research, and convenience stores that do not sell over-the-counter medicines reserved for pharmacies.
Data level: Patient level.
Number of records: Receives 96 million reports per year. Current total number unknown.
Date range: 1995 onwards.
Data access: The access to data from this database is restricted, for this purpose read the instructions presented here.
Information/contact for data request: Contact information.
Pharmacies' sales of medicines
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Quantitative measures related to medications' sales (total quantity sold, total revenue, average shipping price per unit of quantity, regions' health insurance subsidy, pharmacy's total purchase price, pharmacy's purchase price per amount, number of buyers per quarter).
Source of information: The Medicines Statistics Register (LSR).
Data level: National level.
Number of records: Unknown.
Date range: 2018 onwards.
Data access: It is openly available here.
Information/contact for data request: Contact information.
Use of medicines during pregnancy
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Quantitative measures related to medications' sales to pregnant women.
Source of information: The Medicines Statistics Register (LSR).
Data level: National level.
Date range: It is based on the year of birth, which ranges from 2001 to 2018.
Data access: It is openly available here.
Information/contact for data request: Contact information.
Registries
The Danish Cancer Register
Primary purpose: Collects and processes new diagnosed cancer cases in Denmark.
Sponsor, manager or home institution: The Danish Health Data Authority.
Type of information: ICD-10 diagnosis, tumor characteristics (morphology, topography, behaviour, laterality, stage), date of diagnosis, basis for diagnosis, and dissemination of the disease in relation to the time of diagnosis. Information on treatment and notifying hospital can be found in linkage with the Danish National Patient Register (NPR); Cause of death and place of death can be found in linkage with the Danish Register of Causes of Death.
Source of information: 1943 – 2003 on reports from hospitals and practicing specialists. From 2004 onwards, data was collected from the National Patient Register (LPR), the Danish Health Authority's Electronic Reporting System (SEI) and the National Register of Pathology (LRP).
Data level: Patient level.
Date range: 1943 onwards.
Cancer areas of interest: Unknown.
Data access: Restricted access. To request data access contact the Danish Health Data Agency's Research Service as explained here. Some open access data can be checked in the datasets of Cancer Incidence and Cancer Survival, both detailed forward and present in the [www.sundhedsdatastyrelsen.dk Danish Health Data Agency's] website.
Information/contact for data request: Contact information.
New cancer cases report
Primary purpose: Display quantitative information about new cancer cases annually to political professionals, researchers and general public.
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Cancer incidence, prevalence, number of tumors per 100,000 citizens, age-standardized value for the number of tumors (per 100,000 citizens), age- and sex-standardized value for the number of tumors (per 100,000 citizens).
Source of information: The Danish Cancer Register.
Data level: National level.
Date range: From 1978 to 2020
Data access: It is openly available here.
Cancer areas of interest: The list can be checked here.
Information/contact for data request: Contact information.
Compilation: RKKP's Clinical Quality Databases
Primary purpose: Inform about the quality of Denmark's clinical treatment and contribute to improve the health care system.
Sponsor, manager or home institution: Regionernes kliniske kvalitetsprogram (RKKP).
Type of information: Quantitative indicators of cancer care quality and researches developed in the matter. All databases included can be found here. The variables, cancer areas of interest and other individual information about each database can be checked in this link.
Source of information: Registered data from nationwide clinicians is managed by clinical epidemiologists and discussed by in clinical auditions to produce recommendations to increase health care quality.
Data level: Patient level.
Number of Records: Unknown.
Date Range: Varies.
Cancer Areas of Interest: Varies.
Data access: Annual reports are openly available in each database's website. More specific data can be obtained following the instructions presented here.
Information/Contact for data request: Contact information.
Hospital Utilization Information
Sponsor, manager or home institution: Statistics Denmark.
Type of information: Inventory of annual public and private hospital utilization, hospital admitions, outpatient care and emergency admitions, including those related to neoplasic diagnosis related to sociodemographic factors filtered by region, diagnosis, emergency/non emergency, age, sex, year, key figures.
Source of information: National Patient Register, which is validated by the Danish Health Data Agency.
Data level: National level.
Number of Records: Unknown.
Date range: Varies accordingly to the indicator selected.
Cancer Areas of Interest: It can be checked in this list.
Data access: It is openly available here.
Information/contact for data request: Contact information.
The Cause of Death Register (DAR)
[5]
Primary purpose: Make the national number of deaths by causes available to research and statistics purpose.
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Number of deaths (per 100,000 citizens, per 100,000 citizens - age standardized -, Number of deaths per 100,000 citizens - gender and age standardised -) filtered by geographic region, year and diagnosis.
Source of information: Death certificates.
Data level: National level.
Number of Records: Unknown.
Date range: 1970 onwards.
Cancer Areas of Interest: It can be checked in the Cause of death groupings section presented in this website.
Data access: Some information is openly available here. Researchers can request for data contacting the Danish Health Data Agency Research service. Instructions are presented here.
Information/contact for data request: Contact information.
Cancer Survivorship
[6]
Primary purpose: Make the national number of cancer survivorship publicly available to research and statistics purpose.
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Cancer survival statistics in percent (relative to 1, 3, 5, and 10 years) filtered by the cancer diagnosis, survival and confidence limits, geographic region, sex, and year-periods.
Source of information: Reports from the Cancer Register and the Central Person Register (CPR).
Data level: Regional level.
Number of Records: Unknown.
Date range: 2006 onwards.
Cancer Areas of Interest: All cancers (excluding skin cancer other than mole cancer) and for men (excluding prostate cancer) and women (excluding breast cancer). The detailed list can be checked in this document.
Data access: Openly available here.
Information/contact for data request: Contact information.
