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://helsedata.no/en/access-to-data/

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

Population-based data are routinely and prospectively collected on individuals lives and health mandated by law. The personal identity numbers are the key identifiers in all registers/databases, enabling easy, accurate and unambiguous individual-level linkage of the registers.
Data holders: Health Data Service, Norwegian Institute of Public Health
Date established: 2004 for Prescribed Drug Register. 2008 for patient register (hospital, secondary care). 1964 for Population register. 1967 for Medical Birth Register. Different for each register
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

Drug dispensing from pharmacy, Healthcare contact (visit physician, hospital), administration of vaccine, diagnosed with cancer
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

The personal identity numbers are the key identifiers in all registers, enabling easy, accurate and unambiguous individual-level linkage of the registers

Linkage description, possible linkage

The personal identity numbers are the key identifiers in all registers and the data sources we may link to, enabling easy, accurate and unambiguous individual-level linkage of the registers and other data sources

Linked data source 1

Pre linked

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

Yes

Data source, other

All national healthcare and administrative registers can be linked

Linkage variable

National and unique personal identity number assigned at birth or immigration

Linkage completeness

Near complete 100%

Linked data source 2

Pre linked

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

No

Data source, other

Cohort studies with biobanks, surveys, medical quality register for specific diseases

Linkage completeness

Depends on type of consent given by registered person
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Other

Informed consent, other

You may need exemption from the duty of confidentiality

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?

No