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?

No

Description of data collection

Administrative data
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

Emergency care

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

End of treatment
Death

Event triggering creation of a record in the data source

Access to emergency room
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, possible linkage

Record linkage can be performed with all other available information systems (MIS, PHARM, HIS)

Linked data source 1

Pre linked

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

No

Data source, other

HIS

Linkage strategy

Deterministic

Linkage variable

Anonymous Patient Identifier

Linkage completeness

All mostly completed

Linked data source 2

Pre linked

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

No

Data source, other

MIS

Linkage strategy

Deterministic

Linkage variable

Anonymous Patient Identifier

Linkage completeness

All mostly completed

Linked data source 3

Pre linked

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

No

Data source, other

PHARM

Linkage strategy

Deterministic

Linkage variable

Anonymous Patient Identifier

Linkage completeness

All mostly completed
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Other

Informed consent, other

Upon DPO consent

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?

No