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.socialstyrelsen.se/globalassets/sharepoint-dokument/dokument-webb/ovrigt/production-and-quality-can.pdf

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 collected and coded by the 6 regional cancer centres and after quality control forwarded to NBHW
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

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

Other

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

All correctly registered entries in the cancer register is kept in the register. Data is only erased if it was incorrectly registered as a cancer

Event triggering creation of a record in the data source

Incident diagnosis of cancer in Swedish health care
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

Linkage to all Other national registers (e.g. National patient register, Prescribed drug register, Medical birth register and Cause of death register) using an unique personal identification number.

Linked data source 1

Pre linked

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

Yes

Data source, other

Cancer registry Data and

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

All records with valid personal identification numbers can be deterministically linked on demand.

Linked data source 2

Pre linked

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

Yes

Data source, other

Data from statistic swedens population register

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

All records with valid personal identification numbers can be deterministically linked on demand.

Linked data source 3

Pre linked

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

Yes

Data source, other

Data regarding demographic variables

Linkage strategy

Deterministic

Linkage variable

Personal identification number

Linkage completeness

All records with valid personal identification numbers can be deterministically linked on demand.
Data management specifications that apply for the data source

Data source refresh

December

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?

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?

No