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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...

Täydet tiedot

Tallennettuna:
Bibliografiset tiedot
Julkaisussa:J Am Med Inform Assoc
Päätekijät: Choquet, Rémy, Maaroufi, Meriem, de Carrara, Albane, Messiaen, Claude, Luigi, Emmanuel, Landais, Paul
Aineistotyyppi: Artigo
Kieli:Inglês
Julkaistu: Oxford University Press 2015
Aiheet:
Linkit: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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