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

Pseudonymized patient records collected from each hospital's main data sources. Contains data for public hospitals, university hospitals, and local (Dutch) hospital networks
Event triggering registration

Event triggering registration of a person in the data source

Birth
Disease diagnosis
Other
Practice registration
Start of treatment

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

First patient visit to hospital

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

Death
Emigration
End of treatment
Loss to follow up
Other
Practice deregistration

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

Any other hospital exit event

Event triggering creation of a record in the data source

Any other hospital event
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?

Yes

Data source, other

Hospital EMR systems

Linkage strategy

Deterministic

Linkage variable

patient_id

Linkage completeness

100% completeness. All events are linked to the patient.
Data management specifications that apply for the data source

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
Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

Yes

CDM Mappings

CDM name

CTcue Datamodel

Data source ETL CDM version

The CTcue Datamodel is a privacy-by-design on-premise clinical Data warehouse used mostly via the accompanying CTcue search application

Data source ETL status

Completed