Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA).
health information interoperability
rare diseases
registries
Journal
Studies in health technology and informatics
ISSN: 1879-8365
Titre abrégé: Stud Health Technol Inform
Pays: Netherlands
ID NLM: 9214582
Informations de publication
Date de publication:
23 Jun 2020
23 Jun 2020
Historique:
entrez:
25
6
2020
pubmed:
25
6
2020
medline:
26
8
2020
Statut:
ppublish
Résumé
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.
Sections du résumé
BACKGROUND
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
OBJECTIVE
To implement the CDEs and the FAIR data principles in the Registry of Vascular Anomalies (VASCA).
METHODS
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
RESULTS
The FAIR VASCA registry was successfully implemented using Castor EDC (Electronic Data Capture) software.
CONCLUSION
CONCLUSIONS
FAIR technology allows researchers to query and combine data from different registries in real-time.
Identifiants
pubmed: 32578552
pii: SHTI200085
doi: 10.3233/SHTI200085
doi:
Types de publication
Journal Article
Langues
eng