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
Autores principales: Bellgard, Matthew, Beroud, Christophe, Parkinson, Kay, Harris, Tess, Ayme, Segolene, Baynam, Gareth, Weeramanthri, Tarun, Dawkins, Hugh, Hunter, Adam
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2013
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4015362/
https://www.ncbi.nlm.nih.gov/pubmed/24131574
http://dx.doi.org/10.1186/1751-0473-8-21

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4015362/
https://www.ncbi.nlm.nih.gov/pubmed/24131574
http://dx.doi.org/10.1186/1751-0473-8-21

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