Analyzing walking ability in patients with facioscapulohumeral muscular dystrophy

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study focuses on individuals diagnosed with facioscapulohumeral muscular dystrophy (FSH), a genetic condition that leads to progressive muscle weakness and walking difficulties. It aims to assess the functional impact of FSH on walking ability through various walk tests and ecological assessments in real-life settings. By understanding these walking challenges, the study seeks to inform potential therapeutic interventions that could improve patients' mobility and quality of life. Participants will undergo a series of tests to evaluate their walking capabilities over a six-minute period.

Why it matters

Who can join: the full rules

Inclusion Criteria:

Patient :

* Adult ;
* Having given written consent;
* With an established molecular genetic diagnosis of FSH;
* Able to understand the instructions for carrying out the various tests;
* Able to walk for at least 6 minutes, even intermittently;

Exclusion Criteria:

Patient :

* Not affiliated to or not benefiting from a social security scheme;
* With one or more cardiorespiratory contraindications to a 6-minute test;
* With another neuro-orthopaedic history (other than FSH) that could significantly compromise walking ability;
* With cognitive problems preventing them from performing standardised tasks;
* Under legal protection (curatorship, guardianship).
* Who are subject to a legal protection measure;
* Pregnant, parturient or breast-feeding woman;
* Unable to benefit from longitudinal follow-up (D15 and M6).

Where it's running

• Chu Dijon Bourgogne
  Dijon, France Recruiting

Study contacts

• Study coordinator: Nawale HADOUIRI
• Email: nawale.hadouiri@chu-dijon.fr
• Phone: 0380669073

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Del-brax (AOC 1020) intravenous treatment for people with FSHD

  This study will try regular IV infusions of del-brax (AOC 1020) in adults with FSHD to see if it slows muscle weakness and helps preserve walking ability.

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• Apitegromab for FSHD in Adults (Phase 2)

  This study tests whether apitegromab works as a standalone treatment for adults with FSHD.

  Recruiting Phase 2 Scholar Rock, Inc. · Austin, Texas · NCT07435129

• BetterLife FSHD: a patient-driven health platform

  This project tries to connect people with FSHD to personalized resources and collect their health experiences so they can be matched to relevant studies and help improve care.

  Recruiting FSHD Society · Randolph, Massachusetts · NCT07409142

• Personalized exercise treatment for adults with rare neuromuscular disorders

  This study is testing if a personalized exercise program can help adults with rare neuromuscular disorders improve their balance and physical function better than regular care.

  Recruiting at 2 sites Oslo University Hospital · Bergen and 4 other locations · NCT06708468

• Developing new biomarkers for muscular dystrophies

  This study is trying to find easier and less painful ways to measure how serious muscular dystrophies are by looking at urine and blood samples and using simple tests, to help improve diagnosis and treatment for people with these conditions.

  Recruiting at 4 sites Massachusetts General Hospital · Boston, Massachusetts and 4 other locations · NCT05019625

• Registry for patients with Facioscapulohumeral Muscular Dystrophy in the UK

  This study is creating a registry to collect information from people with Facioscapulohumeral Muscular Dystrophy in the UK to better understand the condition and find future trial participants.

  Recruiting Newcastle University · Newcastle upon Tyne · NCT04001582

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.