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).
https://eu-rd-platform.jrc.ec.europa.eu/eurocat/data-collection_en

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

Local registries collect data on individual patients as described in the registry descriptions: https://eu-rd-platform.jrc.ec.europa.eu/eurocat/eurocat-members/registries_en. Data is then transmitted the JRC-EUROCAT Central Registry twice a year.
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

Upon diagnosis of congenital anomaly

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

Other

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

Cases are deleted from the Central Registry only if there is a revision of diagnosis

Event triggering creation of a record in the data source

Recording of a congenital anomaly as per the written guidelines issued by EUROCAT
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?

No
Data management specifications that apply for the data source

Data source refresh

February
October

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?

No

Data source preservation length

75 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 CDM version

1.5

Data source ETL status

Completed