Patient-reported, health economic and psychosocial outcomes in patients with Friedreich ataxia (PROFA): protocol of an observational study using momentary data assessments via mobile health app

INTRODUCTION: Friedreich ataxia (FA) is the most common hereditary ataxia in Europe, characterised by progressively worsening movement and speech impairments with a typical onset before the age of 25 years. The symptoms affect the patients’ health-related quality of life (HRQoL) and psychosocial hea...

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Detalles Bibliográficos
Autores principales: Buchholz, Maresa, Weber, Niklas, Borel, Stephanie, Sayah, Sabrina, Xie, Feng, Schulz, Jörg B, Reetz, Kathrin, Boesch, Sylvia, Klopstock, Thomas, Karin, Ivan, Schöls, Ludger, Grobe-Einsler, Marcus, Klockgether, Thomas, Davies, Elin Haf, Schmeder, Madeleine, Nadke, Andreas, Michalowsky, Bernhard
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Neurology
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10394552/
https://www.ncbi.nlm.nih.gov/pubmed/37527887
http://dx.doi.org/10.1136/bmjopen-2023-075736

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