Danish Health Data Registries

01/02/2024
26/06/2026
Data source
Human
Birth registry
Cancer registry
Death registry
Hospital inpatient records
Hospital outpatient visit records
Other
Pharmacy dispensing records
Population registry
Vaccination registry
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Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).
https://english.sundhedsdatastyrelsen.dk/

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No

Description of data collection

Data is collected from Danish healthcare providers including hospitals, laboratory services, and clinics through mandatory electronic reporting to the Danish National Health Data Authority (Sundhedsdatastyrelsen). Collection is event-triggered, occurring automatically when healthcare events are registered in the healthcare system, including:

-Hospital admissions and discharge diagnoses
-Outpatient clinic visits and procedures
-Laboratory and pathology results
-Vaccinations
-Prescriprion retreivals and indication for the medication
-Surgical procedures and treatments
-Death records and causes of death

Data is collected continuously as part of routine clinical practice documentation. Healthcare providers are legally required to report relevant clinical and administrative data to the national registries. All personal identifiers are replaced with pseudonymized identification numbers for research access. The data is validated through standard quality checks and cross-referenced with civil registration data (CPR number) to ensure accuracy and completeness.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Disease diagnosis
Immigration
Other
Residency obtained
Start of treatment

Event triggering registration of a person in the data source, other

Hospital inpatient / outpatient admission; vaccination; laboratory test result

Event triggering de-registration of a person in the data source

Death
Emigration
Loss to follow up

Event triggering creation of a record in the data source

Hospital inpatient / outpatient admission; vaccination; laboratory test result
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

No

Linkage description, possible linkage

All linkage depends on specific rules for each registry. All national health registries in Denamrk can be linked by the person id number issued to every resident living or born in Denmark. Including The Cause of death registry, Medical birth registry, Vaccination registry, Danish Patient Registry, Registry of pathology, Registry of laboratiry results. These registries can also be linked to other registries and cohorts, after relevant approvals.
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Not Required

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

Data source preservation

Are records preserved in the data source indefinitely?

Yes

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

No
Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

12,00 months

Data source ETL specifications (file)

Data source ETL status

Completed