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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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| Published in: | J Am Med Inform Assoc |
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| Main Authors: | , , , , , |
| Format: | Artigo |
| Language: | Inglês |
| Published: |
Oxford University Press
2015
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| Subjects: | |
| Online Access: | 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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