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).
SCIFI-PEARL/HI-SPEED

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
Event triggering registration

Event triggering registration of a person in the data source

Birth
Immigration
Other

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

Present in Swedish population on 1 Jan 2015, or birth/immigration after that.

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

Death
Emigration

Event triggering creation of a record in the data source

hospital discharge, specialist encounter, primary care encounter, and more, and other health care events, dispensation of a medicinal product, registration of a person (for sociodemographic data).
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

All data sources are linked by deterministic data linkage (Swedish national unique personal ID) and pseudonymized with project ID for linked database.

Linkage description, possible linkage

The data could potentially be linked to many other Swedish sources, conditional on ethics and data holder approvals.

Linked data source 1

Pre linked

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

No

Data source, other

Total Population Register, Migration Register, LISA Register of sociodemographic and economic data, Multi-generation Register, National Patient Register, National Prescribed Drug Register, National Cancer Register, Medical Birth Register, National Cause of Death Register, SmiNet national notifiable disease register, National Vaccination Register, Primary Healthcare Register for Stockholm region, Primary Healthcare Register for Västra Götaland Region. Could potentially be linked to many other Swedish sources, conditional on ethics and data holder approvals.

Linkage strategy

Deterministic

Linkage variable

National personal identifying number used for linkage.
Database uses Study ID after pseudonymization.

Linkage completeness

Close to 100%.
Data management specifications that apply for the data source

Data source refresh

Quarterly
Every 6 months

Informed consent for use of data for research

Not Required

Informed consent, other

Ethics needed if not already covered by available approvals.

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?

Yes

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 CDM version

5.4

Data source ETL frequency

6,00 months

Data source ETL status

Completed

CDM name (other)

Nordic CDM

Data source ETL CDM version

5D

Data source ETL frequency

6,00 months

Data source ETL status

Completed