Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research

BACKGROUND: With hundreds of registries across Europe, rare diseases (RDs) suffer from fragmented knowledge, expertise, and research. A joint initiative of the European Commission Joint Research Center and its European Platform on Rare Disease Registration (EU RD Platform), the European Reference Ne...

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Detalles Bibliográficos
Autores principales: Abaza, Haitham, Kadioglu, Dennis, Martin, Simona, Papadopoulou, Andri, dos Santos Vieira, Bruna, Schaefer, Franz, Storf, Holger
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Original Paper
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9166638/
https://www.ncbi.nlm.nih.gov/pubmed/35594066
http://dx.doi.org/10.2196/32158

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