Understanding the impact of Facioscapulohumeral Muscular Dystrophy on patients' lives
Disease Burden and Living Situation of Patients With Facioscapulohumeral Muscular Dystrophy
This study looks at how Facioscapulohumeral Muscular Dystrophy affects people's daily lives and well-being by gathering their personal experiences and challenges.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 300 (estimated) |
| Sex | All |
| Sponsor | Xi'an Jiaotong University Academic / other |
| Locations | 1 site (Xi'an, Shaanxi) |
| Trial ID | NCT06517498 on ClinicalTrials.gov |
What this trial studies
This observational study aims to explore the patient journey, disease burden, living situation, and quality of life for individuals diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD). Participants will complete a detailed questionnaire and engage in semi-structured interviews to share their experiences and challenges related to the disease. The study includes all sex/gender and age groups to provide a comprehensive understanding of FSHD's impact on daily life. Medical experts will also be interviewed to gain insights into the disease and its effects on patients.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with Facioscapulohumeral Muscular Dystrophy, regardless of age or gender.
Not a fit: Patients who have not been diagnosed with Facioscapulohumeral Muscular Dystrophy will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights that improve the quality of life and care for patients with Facioscapulohumeral Muscular Dystrophy.
How similar studies have performed: While this study focuses on observational data collection, similar studies have successfully highlighted the patient experience in other rare diseases, suggesting a potential for valuable findings.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Having been diagnosed as Facioscapulohumeral Muscular Dystrophy Exclusion Criteria: * No
Where this trial is running
Xi'an, Shaanxi
- Health Science Center of Xi'an Jiaotong University — Xi'an, Shaanxi, China (Recruiting)
Study contacts
- Principal investigator: Wenjing Ji, PhD — Xi'an Jiaotong University
- Study coordinator: Wenjing Ji, PhD
- Email: yfyx_8312@163.com
- Phone: +86 18221252258
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.