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://sundhedsdatastyrelsen.dk/da/forskerservice/ansog-om-data

Biospecimen access

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

Yes

Biospecimen access conditions

Lab data are available in a routine dataset

Access to subject details

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

No

Description of data collection

Routine registration of triggering events.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Immigration

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

Death
Emigration

Event triggering creation of a record in the data source

Danish registries is a set of tables with different events triggering a record in each table depending on the purpose of the registry
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?

Yes

Linkage description, pre-linked

Exact linkage. All researchers access data via Danish Health Data board, which links the data.

Linkage description, possible linkage

Data custodian enables linkage based on protocol

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

All data sources are linkable

Linkage strategy

Deterministic

Linkage variable

Unique personal identifier

Linkage completeness

100%
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Required for intervention studies

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

Data source last refresh

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 status

In progress