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).
Statistical register's production and quality: National Cause of Death Register

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

The register is based on the cause-of-death certificate, which contains information on the individual's cause of death. Data regarding country of birth, county and municipality of registration, etc., are taken from the source register RTB (the Total Population Register) provided by Statistics Sweden (SCB).
Event triggering registration

Event triggering registration of a person in the data source

Other

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

Death

Event triggering creation of a record in the data source

When a death has occured, a cause-of-death certificate, which contains information on the cause of death, is reported to the National Board of Health and Welfare. The collection of the new annual stock is finalised about four to five months after the end of the reporting period.
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

Population register at Statistics Sweden

Linkage description, possible linkage

Possible linkage with other registers in Sweden via personal identification numbers.
Data management specifications that apply for the data source

Data source refresh

Monthly
Yearly

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?

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?

No