Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA).
Stud Health Technol Inform
; 271: 115-116, 2020 Jun 23.
Article
em En
| MEDLINE
| ID: mdl-32578552
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Software
/
Sistema de Registros
/
Elementos de Dados Comuns
Limite:
Humans
Idioma:
En
Ano de publicação:
2020
Tipo de documento:
Article