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A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

Background Although rare disease patients make up approximately 6–8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the nec...

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Detalhes bibliográficos
Publicado no:J Am Med Inform Assoc
Main Authors: Choquet, Rémy, Maaroufi, Meriem, de Carrara, Albane, Messiaen, Claude, Luigi, Emmanuel, Landais, Paul
Formato: Artigo
Idioma:Inglês
Publicado em: Oxford University Press 2015
Assuntos:
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC4433369/
https://ncbi.nlm.nih.gov/pubmed/25038198
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1136/amiajnl-2014-002794
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