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Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA)
Bruna Dos Santos Vieira1, Karlijn Groenen1, P A C 't Hoen1
1Radboud University Medical Center, Nijmegen, Netherlands.
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.
