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

The EVeR Registry (European Venous Registry) collects structured clinical data on patients with deep venous disease across multiple hospital-based vascular centers in Europe. The primary objective is to evaluate patient outcomes, track treatment efficacy, and facilitate research on venous interventions. Patients are enrolled based on specific inclusion criteria and must provide explicit consent to have their data recorded in the registry. Enrollment occurs in specialized hospital settings, including vascular surgery, interventional radiology, and hematology units.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

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

Death
End of treatment
Loss to follow up
Other

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

Patient opting out

Event triggering creation of a record in the data source

A new record is created in the EVeR Registry (European Venous Registry) when a qualifying patient event occurs within a participating hospital-based vascular center. The primary event that triggers data entry is a confirmed diagnosis or a new clinical intervention related to deep venous disease, along with the patient’s consent to be included in the registry.
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

Informed consent for use of data for research

Required for all studies

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

20 years

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?

No