Gait Analysis Parameter, Stair Climbing and Upper Limb Evaluation in Patients with Muscular Pathology and in Control Subjects: the ActiLiège Next Study
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.
• For the patients:
‣ Genetically confirmed diagnosis of DMD, FSHD, DM1, CMT or FKRP mutations or confirmed CNM based on muscle biopsy.
⁃ FSHD, DM1, CMT and CNM patients should be ambulant or in transition.
⁃ DM1 and CMT patients should present sensori-motor signs on physical examination.
⁃ Under the age of 20 years for patients with DMD, CNM or between the ages of 5 and 80 years for patients with FSHD, CMT and DM1.
⁃ More than 2 years old for patients with FKRP mutations
⁃ Non-ambulant DMD patients must be able to remain seated in an arm- or a wheelchair for at least one hour.
⁃ Patients with DMD treated with corticosteroids for at least 6 months or initiated corticosteroid at V0 (except for patients under 4).
⁃ Signed informed consent form by patient himself or, in case of minor patients, signed informed consent form by patient's parents or legal guardians.
• For the control subjects:
‣ Ambulant boys and girls under 20 years old
⁃ Signed informed consent form by patient him/herself or, in case of minor patients, signed informed consent form by patient's parents or legal guardians.