This is a multisite randomized controlled registry-based trial to evaluate the efficacy of an 8-week home-based exergaming intervention as compared to usual care on occupational satisfaction of children and youth (8-18 years old age) with spinal muscular atrophy (SMA).
Confirmed genetic diagnosis of 5q SMA
Age at screening: Aged 8-18 years old
Participant is able to stay seated independently without support for at least 10 seconds
Participants has a score of at least 2 points in entry item A of the RULM (i.e., "Can raise 1 or 2 hands to the mouth but cannot raise a 200 g weight in it to the mouth")
Inability to comply with study procedures according to the site investigator, prior to randomization
Severe scoliosis or contractures that would interfere with gameplay or with successful completion of functional assessments, as confirmed by the clinical evaluator
Planned orthopedic surgery 6 months prior to or throughout intervention and follow-up period (16 weeks post randomization)
Inability to read in English or French
Maryam Oskoui, MD, MSc, FRCPC, FAAN
Lead sponsor
McGill University Health Centre/Research Institute of the McGill University Health Centre
Sponsor institution