Study of Moderate Exercise Effects on Health in Adolescents and Young Adults with Marfan Syndrome

What this Trial Is About

Marfan syndrome MFS is a connective tissue disorder that affects the heart, bones, ligaments, and eyes, with a high risk of aortic dissection. Most patients are advised to avoid certain physical activities due to concerns about safety, leading many to become sedentary. This inactivity can cause weakness, joint pain, reduced endurance, and depressive symptoms. Research in rodents suggests moderate dynamic exercise might protect heart and aorta structures, prompting this trial to assess such exercise effects in adolescents and young adults with MFS. The study randomly assigns up to 50 patients aged 10 to 25 years with MFS to either a moderate dynamic exercise intervention group or a control group, using a 41 ratio. The exercise group receives education, supervised practice, and weekly phone follow-ups to reach and maintain moderate intensity exercise for at least 150 minutes per week over 12 weeks. The control group continues their usual physical activities. Both groups undergo cardiovascular, musculoskeletal, and psychological testing before and after the intervention period. Participants will complete baseline assessments including maximal oxygen uptake, blood pressure, aortic stiffness, heart function by MRI, physical therapy evaluation, and mental health questionnaires. They will use activity trackers to monitor exercise and have regular follow-ups to ensure safety and adherence. The primary outcome is maximum VO2 after 4 months, with secondary outcomes measuring blood pressure, heart strain, aortic dimensions, quality of life, and anxiety or depression symptoms. The study aims to evaluate whether moderate exercise improves health without harming the aorta.

Marfan Syndrome Moderate Exercise Trial II