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Dispelling myths about rare disease registry system development

Rare disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare diseases. If designed appropriately, patient and disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, r...

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Detalles Bibliográficos
Main Authors: Bellgard, Matthew, Beroud, Christophe, Parkinson, Kay, Harris, Tess, Ayme, Segolene, Baynam, Gareth, Weeramanthri, Tarun, Dawkins, Hugh, Hunter, Adam
Formato: Artigo
Idioma:Inglês
Publicado: BioMed Central 2013
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Acceso en liña:https://ncbi.nlm.nih.gov/pmc/articles/PMC4015362/
https://ncbi.nlm.nih.gov/pubmed/24131574
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/1751-0473-8-21
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