Evaluating Movement and Muscle Function in Patients with Various Muscular Disorders and Healthy Controls Using Wearable Devices The ActiLige Next Study

What this Trial Is About

Researchers are collecting long-term data from patients with various neuromuscular disorders such as Duchenne Muscular Dystrophy, Fascioscapulohumeral Muscular Dystrophy, Myotonic Dystrophy 1, Charcot-Marie-Tooth, Centronuclear Myopathy, and Congenital Muscular Dystrophy, along with healthy control subjects. The goal is to validate digital tools that measure motor function continuously in everyday life using a wearable device. This observational study aims to better understand the natural progression of these conditions through real-life movement data. Participants will wear the ActiMyoSyde device, which can be worn on the wrist or ankle, or placed on a wheelchair, for varying periods depending on their condition and age. Patients with different muscular disorders wear the device for 1 to 3 months at the start and then periodically for one month every 3 to 12 months. Control subjects also wear the device for one month at inclusion and for another month either 6 or 11 months later. Patients undergo standard clinical assessments every 6 to 12 months, while control subjects have evaluations at baseline and after 12 months. During the study, participants will be evaluated through timed motor tests, strength tests, and gait analysis conducted by neurologists or neuropaediatricians. Control subjects may be recruited remotely and provide data such as age and weight by phone or video calls. The primary measurements include stride velocity, stride length, stair climbing details such as number, speed, and height of stairs climbed, tracked over a three-year period. This study includes regular follow-ups to monitor motor function changes and device adherence.

Assessments in Patients With Muscular Pathology and in Control Subjects : The ActiLiège Next Study