Qualitative interviews to improve patient-reported outcome measures in late-onset Pompe disease: the patient perspective

BACKGROUND: Late-onset Pompe Disease (LOPD) is a rare, heterogeneous disease manifested by a range of symptoms varying in severity. Research establishing the frequency of these symptoms and their impact on patients’ daily lives is limited. The objective of this study was to develop a conceptual mode...

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Detalles Bibliográficos
Autores principales: Hamed, Alaa, An Haack, Kristina, Gwaltney, Chad, Baranowski, Eileen, Stewart, Andrew, Krupnick, Robert, Tyler, Margaret, Sparks, Susan, Paty, Jean
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8513325/
https://www.ncbi.nlm.nih.gov/pubmed/34641935
http://dx.doi.org/10.1186/s13023-021-02067-x

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