Condition: Muscular Dystrophy, Facioscapulohumeral · Sponsor: Xi'an Jiaotong University
The goal of this observational study is to learn the patient journey, disease burden, living situation, quality of life and etc. in patients with Facioscapulohumeral Muscular Dystrophy in all sex/gender and age groups. The main questions it aims to answer are: 1. What's the patient journey of patients with Facioscapulohumeral Muscular Dystrophy? 2. How does Facioscapulohumeral Muscular Dystrophy burden the patients? 3. How's the quality of life of patients with Facioscapulohumeral Muscular Dystrophy? Patients with Facioscapulohumeral Muscular Dystrophy will be asked to: 1. fill a questionnaire. 2. be interviewed and answer questions about their illness experience, economic burden, quality of life and etc. Medical experts on Facioscapulohumeral Muscular Dystrophy will be asked to be interviewed and answer questions about understanding on the disease and the patients.
This description comes directly from the study's public registry record.
Wenjing Ji, PhD · +86 18221252258 · yfyx_8312@163.com
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| Health Science Center of Xi'an Jiaotong University | Xi'an, Shaanxi, China | Recruiting |
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Source record: clinicaltrials.gov/study/NCT06517498