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).

OMOP governance.pdf

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Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

Yes

Biospecimen access conditions

If a specific study would require us to have access to pathology samples (e.g. tumour samples) that would be possible, since they are stored in-house.

Access to subject details

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

Yes

Description of data collection

The vast majority of our data originates from our EPD, pharmacy, lab system, etc., which is replicated to our data warehouse for processing. The majority of this data is structured. For the patient reported outcomes we use digital questionnaires (called Formasa in our EPD) some fields in these questionnaires are not structured, and require processing by experts prior to the mapping process.
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

Any billable interaction with our hospital

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

Other

Event triggering creation of a record in the data source

Patients are able to opt out for the secondary use of their data. This has not yet happened until this date. There are no other de-registration triggers.
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

Our EPD, lab database, pharmacy database, etc., are integrated systems and can be considered pre-linked.

Linkage description, possible linkage

The Belgian registry number (rijksregisternr.) is available for all patients. If applicable this can be used to link patients to all data sources, including external Belgian sources (government, healthcare,…).
Data management specifications that apply for the data source

Data source refresh

Monthly

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?

Yes

CDM Mappings

Data source ETL CDM version

5.4.1

Data source ETL frequency

0,03 months

Data source ETL status

Completed