Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA).

Background

Connecting currently existing, heterogeneous rare disease (RD) registries would greatly facilitate epidemiological and clinical research. To increase their interoperability, the European Union developed a set of Common Data Elements (CDEs) for RD registries.

Objectives

To implement the CDEs and the FAIR data principles in the Registry of Vascular Anomalies (VASCA).

Methods

We created a semantic model for the CDE and transformed this into a Resource Description Framework (RDF) template. The electronic case report forms (eCRF) were mapped to the RDF template and published in a FAIR Data Point (FDP).

Results

The FAIR VASCA registry was successfully implemented using Castor EDC (Electronic Data Capture) software.

Conclusion

FAIR technology allows researchers to query and combine data from different registries in real-time.