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The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration
BACKGROUND: The European Union acknowledges the relevance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning and funded the EPIRARE project to improve standardization and data comparability among patient regist...
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| Main Authors: | , , , , , |
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| Formato: | Artigo |
| Idioma: | Inglês |
| Publicado em: |
BioMed Central
2014
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| Assuntos: | |
| Acesso em linha: | https://ncbi.nlm.nih.gov/pmc/articles/PMC4210567/ https://ncbi.nlm.nih.gov/pubmed/25352985 https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/2049-3258-72-35 |
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