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)?

Yes

Biospecimen access conditions

We have access to the results from analyses run on biospecimens.

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No

Description of data collection

We use Oracle Data Integrator as an Extract Transform Load (ETL) tool to collect data from the patient health records, load them into the clinical data warehouse (daily) and quality assure and compile the data so that it is ready for secondary use (ad hoc reports, dashboards, machine learning).
Event triggering registration

Event triggering registration of a person in the data source

Birth
Disease diagnosis
Other
Start of treatment

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

Any registration about a patient in one of the systems that are sources for the clinical data warehouse

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

Other

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

Opt-out

Event triggering creation of a record in the data source

Any registration about a patient in one of the systems that are sources to the clinical data warehouse
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

The data warehouse creates a unique patient key that identifies each patient across all sources.

Linked data source 1

Pre linked

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

Yes

Linkage strategy

Deterministic

Linkage variable

Patient ID

Linkage completeness

100%
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

Depending on the purpose of the study, the consent is implicit or 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?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

0,03 months

Data source ETL status

In progress

Data source ETL specifications (link)