TY - JOUR
T1 - Applying the FAIR Data Principles to the Registry of Vascular Anomalies (VASCA)
AU - Dos Santos Vieira, Bruna
AU - Groenen, Karlijn
AU - 't Hoen, P. A. C.
AU - Jacobsen, Annika
AU - Roos, Marco
AU - Kaliyaperumal, Rajaram
AU - Kersloot, Martijn
AU - Cornet, Ronald
AU - Schultze Kool, Leo
N1 - Funding Information: This work is partially supported by the funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575. One author of this publication is member of the Vascular Anomalies Working Group (VASCA WG) of the European Reference Network for Rare Multisystemic Vascular Diseases (VASCERN) - Project ID: 769036. Funding Information: This work is partially supported by the funding from the European Union's Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N? 825575. One author of this publication is member of the Vascular Anomalies Working Group (VASCA WG) of the European Reference Network for Rare Multisystemic Vascular Diseases (VASCERN) - Project ID: 769036. Publisher Copyright: © 2020 The authors, AIT Austrian Institute of Technology and IOS Press. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020/6/23
Y1 - 2020/6/23
N2 - 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.
AB - 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.
KW - Health information interoperability
KW - Rare diseases
KW - Registries
UR - http://www.scopus.com/inward/record.url?scp=85087021109&partnerID=8YFLogxK
U2 - https://doi.org/10.3233/SHTI200085
DO - https://doi.org/10.3233/SHTI200085
M3 - Article
C2 - 32578552
SN - 0926-9630
VL - 271
SP - 115
EP - 116
JO - Studies in health technology and informatics
JF - Studies in health technology and informatics
ER -