New app could help track muscle disease from your living room
NCT ID NCT05812144
First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study tested whether a mobile app (myFSHD) can help doctors monitor patients with facioscapulohumeral muscular dystrophy (FSHD) remotely. 70 adults with FSHD used the app at home for 12 months, completing questionnaires and video-recorded exercises. The goal was to see if patients would stick with the program and if the data collected is reliable compared to in-clinic assessments.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- Active substance
- remote monitoring program (mobile app with questionnaires and exercises)
- What this could lead to
- If successful, this could provide reliable tools to monitor FSHD from home, making clinical trials easier and more patient-friendly.
- What could go wrong
- This is a small, completed feasibility study (70 people) focused on testing the app, not on treatment. It may not lead to immediate changes in care.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Phase
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Not a phased trial
Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.
- Participants
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70 people
The number who actually took part.
- Started
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May 2023
- Finished
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Jan 2026
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
- Ages
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18 to 75 years
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion criteria: * Genetically confirmed FSHD1 or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring (40) * Age 18-75 years * Symptomatic limb weakness * Patient able to walk alone or with a walking aid. * Patient affiliated to the social security system * Patient giving written consent after written and oral information. * If taking over the counter supplements willing to remain consistent with supplement regimen throughout the course of the study Non inclusion criteria: * Patients with comorbidity not related to the disease that can modify the natural evolution of the disease or would interfere with safe testing in the opinion of the Investigator * Regular use of available muscle anabolic/catabolic agents such as corticosteroids, oral testosterone or derivatives, or oral beta agonists * Use of an experimental drug in an FSHD clinical trial within the past 30 days * Pregnant or nursing women for women of childbearing age * Patient protected by law, under guardianship or curator ship, or not able to participate in a clinical study according to the article L.1121-16 of the French Public Health Code
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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CHRU de Lille
Lille, Hauts-de-France, 59000, France
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CHU de Nice
Nice, Provence-Alpes-Côte d'Azur Region, 06000, France
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Institut de Myologie
Paris, Île-de-France Region, 75013, France