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1 . Academic Journal
Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries
저자
by
Bruna dos Santos Vieira
;
César H. Bernabé
;
Shuxin Zhang
;
Haitham Abaza
;
Nirupama Benis
, et al.
소스
Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-12 (2022)
Open Access (BioMed Central)
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7 . Academic Journal
Semantic modelling of common data elements for rare disease registries, and a prototype workflow for their deployment over registry data
저자
by
Rajaram Kaliyaperumal
;
Mark D. Wilkinson
;
Pablo Alarcón Moreno
;
Nirupama Benis
;
Ronald Cornet
, et al.
소스
Journal of Biomedical Semantics, Vol 13, Iss 1, Pp 1-16 (2022)
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7 . Academic Journal
A Resource for Guiding Data Stewards to Make European Rare Disease Patient Registries FAIR
저자
by
Philip van Damme
;
Pablo Alarcón Moreno
;
César H. Bernabé
;
Alberto Cámara Ballesteros
;
Clémence M. A. Le Cornec
, et al.
소스
Data Science Journal, Vol 22, Pp 12-12 (2023)
Open Access (DOAJ)
Scopus
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7 . Academic Journal
The de novo FAIRification process of a registry for vascular anomalies
저자
by
Karlijn H. J. Groenen
;
Annika Jacobsen
;
Martijn G. Kersloot
;
Bruna dos Santos Vieira
;
Esther van Enckevort
, et al.
소스
Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-10 (2021)
Open Access (BioMed Central)
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7 . Academic Journal
Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research
저자
by
Haitham Abaza
;
Dennis Kadioglu
;
Simona Martin
;
Andri Papadopoulou
;
Bruna dos Santos Vieira
, et al.
소스
JMIR Medical Informatics, Vol 10, Iss 5, p e32158 (2022)
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7 .
FAIRification workflow: Making data FAIR in practice and ready for the Health-RI infrastructure
저자
by
Sander de Ridder
;
Jolanda Strubel
;
Bruna dos Santos Vieira
;
Mijke Jetten
.
소스
Open Access (OpenAIRE)
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6 .
The impact of dedicated FAIRification stewardship guiding European Reference Networks towards making rare disease resources FAIR
저자
by
Bruna dos Santos Vieira
;
Inês Henriques
;
César Henriques Bernabé
;
Shuxin Zhang
;
Alberto Cámara Ballesteros
, et al.
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7 .
Critical steps towards large-scale implementation of the FAIR data principles
저자
by
Bruna dos Santos Vieira
;
César Henrique Bernabé
;
Ines Henriques
;
Shuxin Zhang
;
Alberto Ballasteros Camara
, et al.
소스
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7 .
The International Society for the Study of Vascular Anomalies (ISSVA) ontology
저자
by
Philip van Damme
;
Martijn G. Kersloot
;
Bruna dos Santos Vieira
;
Leo Schultze Kool
;
Ronald Cornet
, et al.
소스
Journal of Web Semantics, 74:100731. Elsevier
Journal of Web Semantics, 74, 1570-8268
Journal of Web Semantics, 74, pp. 1570-8268
Open Access (OpenAIRE)
Web of Science
Scopus
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7 .
The de novo FAIRification process of a registry for vascular anomalies
저자
by
Martijn G. Kersloot
;
Ronald Cornet
;
Leo J. Schultze Kool
;
Annika Jacobsen
;
Marco Roos
, et al.
소스
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases, 16, 1
Orphanet journal of rare diseases, 16(1):376. BioMed Central
Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-10 (2021)
Orphanet Journal of Rare Diseases, 16(1). BMC
Orphanet Journal of Rare Diseases, 16
Orphanet journal of rare diseases, 16(1):376. BMC
Open Access (BioMed Central)
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Scopus
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