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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Bibliografiska uppgifter
Huvudupphovsmän: Bellgard, Matthew, Beroud, Christophe, Parkinson, Kay, Harris, Tess, Ayme, Segolene, Baynam, Gareth, Weeramanthri, Tarun, Dawkins, Hugh, Hunter, Adam
Materialtyp: Artigo
Språk:Inglês
Publicerad: BioMed Central 2013
Ämnen:
Research
Länkar: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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