BONeMOVE: Adapted Physical Activity Program for Effort Rehabilitation of Children and Teenagers With Osteogenesis Imperfecta

What this Trial Is About

Researchers are evaluating the effects of a 6-month adapted physical activity program on the endurance of children and adolescents aged 7 to 18 with Osteogenesis Imperfecta (OI), a rare genetic condition causing fragile bones and muscle weakness. The study aims to see if this exercise program can improve maximum oxygen consumption (VO2 peak), endurance, and quality of life by addressing common symptoms such as chronic fatigue and decreased physical function. The intervention involves a personalized training program tailored to each participant's condition and abilities. Assessments will take place over two visits spaced six months apart at the Constitutional Bone Diseases unit. The adapted physical activity program will be shared with participants and their families via videoconference, with regular adjustments made every 15 days through phone calls by an APA coach to support ongoing participation. Participants will undergo evaluations including endurance testing, quality of life questionnaires, step counts, and weight measurements at the start and after six months. Researchers will monitor changes in maximum endurance capacity and other health indicators. The study provides ongoing support and reassessment to help maintain engagement and track progress throughout the six-month period.

Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Osteogenesis Imperfecta