Data from: Patient-Reported Symptoms in Facioscapulohumeral Muscular Dystrophy (PRISM-FSHD)

Johanna Hamel, Nicholas E. Johnson, Rabi Tawil, William B. Martens, Nuran Dilek, Michael P. McDermott & Chad Rydel Heatwole
Objective: To determine the frequency and relative importance of the most meaningful symptoms in facioscapulohumeral muscular dystrophy (FSHD) and to identify the demographic and clinical features that are associated with the greatest disease burden in this population. Methods: We performed a cross-sectional study involving 328 FSHD participants. Collectively, participants reported the prevalence and relative importance of 274 symptoms and 15 symptomatic themes. We assessed the association between symptomatic theme prevalence and participants’ age, sex, disease...
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