An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development

BACKGROUND: With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify...

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Detalles Bibliográficos
Autores principales: Kourime, M., Bryce, J., Jiang, J., Nixon, R., Rodie, M., Ahmed, S.F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5360059/
https://www.ncbi.nlm.nih.gov/pubmed/28320446
http://dx.doi.org/10.1186/s13023-017-0603-7

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5360059/
https://www.ncbi.nlm.nih.gov/pubmed/28320446
http://dx.doi.org/10.1186/s13023-017-0603-7

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