Actively Recruiting
Marfan&Moves (M&M's): Adapted Physical Activity Program for Effort Rehabilitation in Children and Teenagers With Marfan Syndrome
Led by University Hospital, Toulouse · Updated on 2026-03-03
30
Participants Needed
1
Research Sites
26 weeks
Total Duration
On this page
AI-Summary
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 child's 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.
CONDITIONS
Brief Title
Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Genetically confirmed Marfan syndrome or related syndrome
- Girl or boy aged 7 to 17 years
- Informed and written consent signed by at least one parent or guardian
- Patient affiliated to a social security scheme or equivalent
You will not qualify if you...
- Severe aortic dilation (aortic diameter > 45 mm)
- Left ventricular failure (ejection fraction < 45%)
- Severe mitral leakage of grade 3 or higher
- Pregnancy
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - 6 months
Participants undergo a personalized physical activity program designed by an APA coach based on an initial complete assessment including a cardiopulmonary exercise test.
2 visits at 6 months interval plus phone calls every 15 days for reassessment and adjustment
Trial Site Locations
Total: 1 location
1
CHU Toulouse
Toulouse, France
Actively Recruiting
Research Team
T
Thomas EDOUARD, MD
F
Fernanda BAJANCA
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
PREVENTION
Number of Arms
1
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