Randomized Trial of Home-Based Upper Limb Exergaming for Children and Teens with Spinal Muscular Atrophy Aged 8 to 18 Years

What this Trial Is About

Researchers are evaluating the effectiveness of an 8-week home-based upper limb exergaming program compared to usual care for children and youth aged 8 to 18 years with spinal muscular atrophy SMA. This multisite randomized controlled registry-based trial aims to assess how this intervention impacts occupational satisfaction, an important aspect of daily living for participants with SMA. Participants in the intervention group will play the exergame Tales from the Magic Keep on the Microsoft Azure Kinect platform at home, three times a week for at least 20 minutes each session, totaling 8 hours over 8 weeks. Both groups will continue their usual physical activities and rehabilitation services. After the initial 8 weeks, there is an open-label extension phase where all participants will have the opportunity to play the exergame at home for another 8 weeks. During the study, researchers will assess occupational satisfaction using the Canadian Occupational Performance Measure over 16 weeks. They will also monitor self-reported fatigue, independence in daily activities, and upper limb motor activity. Assessments will be conducted at baseline and follow-up visits, ensuring participant safety and adherence throughout the trial period, which runs until December 2027.

A Registry Based Randomized-Controlled Trial of an Upper Limb Exergaming Intervention for Children and Adolescents With Spinal Muscular Atrophy