Actively Recruiting
Disease Burden and Living Situation of Patients With Facioscapulohumeral Muscular Dystrophy
Led by Xi'an Jiaotong University · Updated on 2024-07-24
300
Participants Needed
1
Research Sites
69 weeks
Total Duration
On this page
Sponsors
X
Xi'an Jiaotong University
Lead Sponsor
C
Chinese Organization for Rare Disorders
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Disease Burden and Living Situation of Patients With Facioscapulohumeral Muscular Dystrophy
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Having been diagnosed as Facioscapulohumeral Muscular Dystrophy
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Health Science Center of Xi'an Jiaotong University
Xi'an, Shaanxi, China, 710049
Actively Recruiting
Research Team
W
Wenjing Ji, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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