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://www.esundhed.dk/Dokumentation/DocumentationExtended?id=5

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 submitted to data owners through a contracted vendor from both public and private hospitals.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Other

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

If you are not born in Denmark, you will enter the database on the first hospital encounter

Event triggering creation of a record in the data source

Each hospital encounter triggers a data source record.
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, possible linkage

It is possible to link NPR to Other Danish registers through the personal identification number. Examples of Other Danish national health care registers are:
- The Register of Medicinal Products Statistics (Contains patient-level Data on all prescription drugs filled by patients at community pharmacies)
- The Medical Birth Register (The register is an enrichment of Data already recorded in the National Patient Register and compiles relevant information on pregnancies that has led to childbirth in Denmark at home or in a hospital. This register includes linkage between infant, mOther, and father)
- The Cause of Death Register (Contains information on date and cause of death).
- The Danish Civil Registration System (CPR) (contains basic information on everybody that has a civil registration number, e.g., emigration status, marriage status, wheter person is alive or dead)

Linked data source 1

Pre linked

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

No

Data source, other

The Cause of Death Register (Contains information on date and cause of death).

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

100%

Linked data source 2

Pre linked

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

No

Data source, other

The Danish Civil Registration System (CPR) (contains basic information on everybody that has a civil registration number, e.g., emigration status, marriage status, wheter person is alive or dead)

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

100%

Linked data source 3

Pre linked

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

No

Data source, other

The Medical Birth Register (The register is an enrichment of Data already recorded in the National Patient Register and compiles relevant information on pregnancies that has led to childbirth in Denmark at home or in a hospital. This register includes linkage between infant, mOther, and father)

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

100%

Linked data source 4

Pre linked

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

No

Data source, other

The Register of Medicinal Products Statistics (Contains patient-level Data on all prescription drugs filled by patients at community pharmacies)

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

100%
Data management specifications that apply for the data source

Data source refresh

Monthly

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)?

No

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?

No