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

Data are integrated daily from the hospital information system into an CDW in i2b2 format.
Data integrated in i2b2 are loaded every 4 months into an CDW in OMOP-CDM format. 80% of data is mapped to standard terminologies.
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

Hospital visit (in and outhospital)

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

Other

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

Patient opposition to secondary use of data

Event triggering creation of a record in the data source

Hospital encounter (in-hospital and out-hospital)
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

Probabilistic matching based on identity traits
(https://doi.org/10.1093/jamiaopen/ooab005)

Linked data source 1

Pre linked

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

No

Data source, other

French death registry (open data)

Linkage strategy

Probabilistic

Linkage variable

Last names, First Name, Birth date, Gender, Birth location, Birth country, Date of death, Last visit date

Linkage completeness

The recall and precision of our linkage strategy is 97.5% and 99.97%
2/3 of known deaths are derived from this external database.
Data management specifications that apply for the data source

Data source refresh

Quarterly

Informed consent for use of data for research

Informed consent, other

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

15 years

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 frequency

0,03 months

Data source ETL status

Completed

Data source ETL specifications (link)

Data source ETL CDM version

5.4

Data source ETL frequency

3,00 months

Data source ETL status

In progress

Data source ETL specifications (link)