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Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA)
Bruna dos Santos Vieira, Karlijn Groenen, P.A.C. ‘t Hoen, Annika Jacobsen, Marco Roos, Rajaram Kaliyaperumal, Martijn Kersloot, Ronald Cornet, Leo Schultze Kool
115 - 116
10.3233/SHTI200085
Research Article
Studies in Health Technology and Informatics
Volume 271: dHealth 2020 – Biomedical Informatics for Health and Care
Abstract

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.

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Creative Commons License