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).

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?

Yes

Description of data collection

Monthly batch uploads peformed by the hospitals themselves
Event triggering registration

Event triggering registration of a person in the data source

Insurance coverage start

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

Insurance coverage end

Event triggering creation of a record in the data source

Hospital encounter
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

Linked data source 1

Pre linked

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

No

Data source, other

Datasources which have unpseudonymized patient codes available (linkage to pathology, prescription, cancer registry, clinical registries such as the Dutch DICA registry and IKNL registry)

Linkage strategy

Deterministic

Linkage variable

Patient code or unique combination of characteristics

Linkage completeness

Highly dependent on disease and a data source

Linked data source 2

Pre linked

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

Yes

Data source, other

DBC

Linkage strategy

Deterministic

Linkage variable

Patient code

Linkage completeness

Complete

Linked data source 3

Pre linked

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

Yes

Data source, other

EVS

Linkage strategy

Deterministic

Linkage variable

Patient code

Linkage completeness

Complete
Data management specifications that apply for the data source

Data source refresh

Quarterly

Informed consent for use of data for research

Other

Informed consent, other

Not required within specific purpose / waiver

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?

No

Data source preservation length

5 years

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes
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

1,00 month

Data source ETL status

Planned