Actively Recruiting
Walking ANalysis Interest in Persons wiTh facioscapulohumEral Muscular Dystrophies
Led by Centre Hospitalier Universitaire Dijon · Updated on 2026-03-03
60
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Facioscapulohumeral muscular dystrophy FSH is a common genetic muscle disorder in adults that causes progressive muscle wasting, especially in the face and upper limbs, leading to walking difficulties. Many patients eventually require a wheelchair by age 60. While molecular research is advancing potential treatments, few studies focus on how FSH affects walking ability in daily life. Current assessments are time-consuming and limited to specialized centers, so there is a need for simpler, more practical walking tests. This study evaluates quick and easy walking tests, such as the 10-meter walk, Time Up and Go test, and 6-minute walk, using wearable inertial sensors to measure walking ability in people with FSH. Participants will also use an actimeter and logbook for a week to assess walking in real-life conditions. The goal is to compare these simpler tests with existing clinical scales to improve functional evaluation and monitoring of walking difficulties in FSH patients. Participants will perform several walking tests while wearing sensors, and their exertion will be measured using the Borg scale. They will also be monitored for seven days in their daily environment using wearable devices and a logbook. Researchers will measure average walking speed during the 6-minute walk over about 30 months. The study includes follow-ups at 15 days and 6 months to assess changes and safety. This approach aims to provide new, practical data to better track and understand walking challenges in FSH.
CONDITIONS
Brief Title
Walking ANalysis Interest in Persons wiTh facioscapulohumEral Muscular Dystrophies
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adult
- Have given written consent
- Have a confirmed molecular genetic diagnosis of facioscapulohumeral muscular dystrophy (FSH)
- Able to understand instructions for performing the tests
- Able to walk for at least 6 minutes, even if intermittently
You will not qualify if you...
- Not affiliated with or not benefiting from a social security scheme
- Have one or more heart or lung conditions preventing a 6-minute walking test
- Have other neurological or orthopedic conditions that significantly affect walking ability besides FSH
- Have cognitive problems preventing performance of standardized tasks
- Under legal protection such as curatorship or guardianship
- Pregnant, giving birth, or breastfeeding
- Unable to participate in follow-up visits at 15 days and 6 months
Research Team
N
Nawale HADOUIRI
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