Development of newborn screening connect (NBS connect): a self-reported patient registry and its role in improvement of care for patients with inherited metabolic disorders

BACKGROUND: Newborn Screening Connect (NBS Connect) is a web-based self-reported patient registry and resource for individuals and families affected by disorders included in the newborn screening panel. NBS Connect was launched in 2012 by Emory University after years of planning and grassroots work...

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Detalles Bibliográficos
Autores principales: Osara, Yetsa, Coakley, Kathryn, Devarajan, Aishwarya, Singh, Rani H.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5517813/
https://www.ncbi.nlm.nih.gov/pubmed/28724394
http://dx.doi.org/10.1186/s13023-017-0684-3

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