Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA)
SourceStudies in Health Technology and Informatics, 271, (2020), pp. 115-116
Article / Letter to editor
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Studies in Health Technology and Informatics
SubjectRadboudumc 16: Vascular damage RIHS: Radboud Institute for Health Sciences; Radboudumc 19: Nanomedicine RIMLS: Radboud Institute for Molecular Life Sciences
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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