An interventional study of ActiMyo/Syde in Duchenne Muscular Dystrophy, Fascioscapulohumeral Muscular Dystrophy and Myotonic Dystrophy 1, sponsored by Centre Hospitalier Universitaire de Liege. Recruiting at 8 sites in 7 countries. Open to participants aged 1 Year to 80 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2025-05-20.
Sponsored by Centre Hospitalier Universitaire de Liege · Not applicable, Interventional, and Basic science
The objective of the ActiLiège Next study is to collect longitudinal data from patients and control subjects using a wearable magneto-inertial device. By collecting natural history data in various neuromuscular disorders (Duchenne Muscular Dystrophy, Fascioscapulohumeral Muscular Dystrophy, Myotonic Dystrophy 1, Charcot-Marie-Tooth, Centronuclear Myopathy, Congenital Muscular Dystrophy), we aim to validate digital outcome measures to continuously assess motor function in real-life.
548 studies on the registry are indexed under Muscular Dystrophies; 89 are open to participants now.
This study's planned enrollment of 300 is above the median of 24 across 344 interventional studies indexed under Muscular Dystrophies.
Browse Muscular Dystrophies studies →Centre Hospitalier Universitaire de Liege is the lead sponsor of 37 studies on the registry; 24 are open to participants now.
Counted across the registry records on this site, refreshed daily.
For the patients:
For the control subjects:
Exclusion Criteria:
For the patients:
For the control subjects:
Patients and control subjects will be included over a 3-years study period. Patients will be examined by a neuropaediatrician or neurologist and perform standardized assessments (timed tests, motor function tests, and strength tests) at baseline and then every 6 to 12 months (depending on age). From February 2024, controls subjects can be remotely recruited and enrolled. They won't be evaluated on site, but data, such as age, sex, weight, and height, will be collected by phone or visio-conference at inclusion and every 6 months for 3 years. Patients will be asked to wear the device during 1 to 3 months at baseline (depending on disease group) and then for 1 month every 3-12months (depending on age and disease group). Control subjects will be examined by a physician and perform the same tests than those for ambulant patients at baseline and 12 months. Control subjects will be asked to wear the device for two months (one month at inclusion, one month 11 months after inclusion).
Device: ActiMyo/Syde
The two "watches" can be worn as wristwatch or placed near the ankle and on the wheelchair. * Patients with DMD or FKRP mutation will wear the ActiMyo°/Syde° during 3 months at baseline and then for one month every 3 months. * Patient with FSHD, DM1, CMT, CNM will wear the ActiMyo°/Syde° will wear the ActiMyo/Syde° during 3 months at baseline and then for one month every 6 months. * Control subjects \>4years will wear the ActiMyo°/Syde° during one month after inclusion and during one other month 11 months after inclusion. * Control subjects \<4years will wear the ActiMyo°/Syde° during one month after inclusion and during one other month every 6months after inclusion.
Stride velocity
Stride velocity obtained with a magneto-inertial sensor (Actimyo°) in real-life (meter per second).
Time frame: through study completion (3 year)
Stride length
Stride length obtained with a magneto-inertial sensor (Actimyo°) in real-life (meter).
Time frame: through study completion (3 year)
Stairs number
Total number of strides in stairs obtained with a magneto-inertial sensor (Actimyo°) in real-life
Time frame: through study completion (3 year)
Stairs speed
Vertical speed during strides in stairs obtained with a magneto-inertial sensor (Actimyo°) in real-life
Time frame: through study completion (3 year)
Stairs height
Height of the strides in stairs obtained with a magneto-inertial sensor (Actimyo°) in real-life
Time frame: through study completion (3 year)
Plan to share: No
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Centre Hospitalier Universitaire de Liege