Adapted Physical Activity Program to Improve Endurance in Children and Teens with Marfan Syndrome

What this Trial Is About

Researchers are evaluating the impact of a 6-month adapted physical activity program APA on endurance in children and teenagers with Marfan syndrome or related conditions. Marfan syndrome involves connective tissue fragility causing multisystem damage, including musculoskeletal problems, fatigue, and pain, which affect quality of life. Prior studies showed reduced endurance in this group, which improved after intensive rehabilitation, prompting this study to assess a more practical, daily-life adapted program. The study involves a personalized training program designed by an APA coach based on a thorough assessment including a cardiopulmonary exercise test measuring maximum oxygen consumption VO2 peak. The program is tailored to the childs lifestyle and interests and is shared with the child and family via videoconference. The coach will regularly adjust the program every two weeks through phone calls to support ongoing participation. Participants attend two visits spaced six months apart at the Toulouse University Hospital, where they undergo exercise testing and evaluation by the APA coach. The main outcome is the change in endurance capacity measured by VO2 peak from baseline to six months. The study aims to improve endurance, prevent physical deconditioning, and enhance long-term health benefits for children with Marfan syndrome.

Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome