Cargando…
“I have SMA, SMA doesn’t have me”: a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA
BACKGROUND: With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide opti...
Autores principales: | Mazzella, Allison, Curry, Mary, Belter, Lisa, Cruz, Rosángel, Jarecki, Jill |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7898731/ https://www.ncbi.nlm.nih.gov/pubmed/33618755 http://dx.doi.org/10.1186/s13023-021-01701-y |
Ejemplares similares
-
The Cure SMA Clinical Trial Experience Survey: A Study of Trial Participant Perspectives on Clinical Trial Management and Patient-Centric Management Practices
por: Peterson, Ilse S., et al.
Publicado: (2022) -
The SMA Clinical Trial Readiness Program: creation and evaluation of a program to enhance SMA trial readiness in the United States
por: Peterson, Ilse, et al.
Publicado: (2020) -
Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey
por: Belter, Lisa, et al.
Publicado: (2020) -
Awareness screening and referral patterns among pediatricians in the United States related to early clinical features of spinal muscular atrophy (SMA)
por: Curry, Mary, et al.
Publicado: (2021) -
An overview of the Cure SMA membership database: Highlights of key demographic and clinical characteristics of SMA members
por: Belter, Lisa, et al.
Publicado: (2018)