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Disease Burden and Living Situation of Patients With Facioscapulohumeral Muscular Dystrophy

NCT06517498 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 300

Last updated 2024-07-24

No results posted yet for this study

Summary

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

  • Muscular Dystrophy, Facioscapulohumeral

Interventions

OTHER

No Intervention

No Intervention will be conducted

Sponsors & Collaborators

  • Chinese Organization for Rare Disorders

    collaborator UNKNOWN

  • First Affiliated Hospital of Fujian Medical University

    collaborator OTHER

  • Xi'an Jiaotong University

    lead OTHER

Principal Investigators

  • Wenjing Ji, PhD · Xi'an Jiaotong University

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-03-01
Primary Completion
2025-03-31
Completion
2025-07-31

Countries

  • China

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06517498 on ClinicalTrials.gov