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.
To implement the CDEs and the FAIR data principles in the Registry of Vascular Anomalies (VASCA).
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).
The FAIR VASCA registry was successfully implemented using Castor EDC (Electronic Data Capture) software.
FAIR technology allows researchers to query and combine data from different registries in real-time.
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