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Standardization of Questions in Rare Disease Registries: The PRISM Library Project

BACKGROUND: Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed struc...

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Detalhes bibliográficos
Main Authors: Richesson, Rachel Lynn, Shereff, Denise, Andrews, James Everett
Formato: Artigo
Idioma:Inglês
Publicado em: JMIR Publications Inc. 2012
Assuntos:
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC3626121/
https://ncbi.nlm.nih.gov/pubmed/23611924
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.2196/ijmr.2107
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