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.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
BASIC_SCIENCE
Masking
NONE
Enrollment
300
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.
CHR de la Citadelle
Liège, Belgium
RECRUITINGFakultni nemocnice v Motole
Prague, Czechia
ACTIVE_NOT_RECRUITINGGalaa Military Medical Complex
Cairo, Egypt
ACTIVE_NOT_RECRUITINGSemmelweis University 2nd Department of Paediatrics
Budapest, Hungary
ACTIVE_NOT_RECRUITINGWarsaw Medical University Hospital, Department of Neurology
Warsaw, Poland
ACTIVE_NOT_RECRUITINGPediatric Neurology Clinic, Clinical Hospital of Psychiatry "Prof. Dr. Al. Obregia"
Bucharest, Romania
RECRUITINGNational Clinical Hospital for Children Neurohabilitation "Dr Nicolae Robanescu"
Bucharest, Romania
ACTIVE_NOT_RECRUITINGUniversity Children's Hospital, Department for Pediatric Neurology
Ljubljana, Slovenia
ACTIVE_NOT_RECRUITINGStride 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)
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.