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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...
| Autores principales: | , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
JMIR Publications Inc.
2012
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626121/ https://www.ncbi.nlm.nih.gov/pubmed/23611924 http://dx.doi.org/10.2196/ijmr.2107 |