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“We needed this”: perspectives of parents and healthcare professionals involved in a pilot newborn screening program for spinal muscular atrophy

BACKGROUND: Newborn screening (NBS) for spinal muscular atrophy (SMA) is a recognised model through which health outcomes can be improved. However, perspectives of parents and healthcare professionals (HCPs) involved in such programs are largely unknown. METHODS: A pilot program for SMA ran from Aug...

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Detalles Bibliográficos
Autores principales: Kariyawasam, Didu S.T., D'Silva, Arlene M., Vetsch, Janine, Wakefield, Claire E., Wiley, Veronica, Farrar, Michelle A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8020144/
https://www.ncbi.nlm.nih.gov/pubmed/33842861
http://dx.doi.org/10.1016/j.eclinm.2021.100742