Adapted physical activity program to improve endurance in children and teens with Marfan syndrome
Official title: Marfan&Moves (M&M's) : an Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome: an Interventional, Prospective, Monocentric Study.
Run by University Hospital, Toulouse · NCT05838235 · Data updated 2026-11-12
This project will try a 6‑month tailored exercise program to see if it improves endurance (VO2 peak) and quality of life in children and teenagers with Marfan syndrome.
Quick facts
| Study type | Interventional |
|---|---|
| Ages | 7 Years to 17 Years |
| Sex | All |
| Enrollment | 30 (estimated) |
| Sponsor | University Hospital, Toulouse Academic / other |
| Locations | 1 site (Toulouse) |
| Status | Recruiting |
| Started | April 24, 2023 |
| Main results expected | April 2028 |
| Study ends | October 2028 |
| Registry record updated | March 3, 2026 |
| Trial ID | NCT05838235 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are children and teenagers aged 7–17 with genetically confirmed Marfan syndrome who have parental informed consent, are affiliated to a social security scheme or equivalent, and do not have the trial's cardiac contraindications.
✕Probably not a fit
Patients with severe cardiac involvement (aortic diameter >45 mm, left ventricular ejection fraction <45%, or severe mitral regurgitation ≥ grade 3), pregnant patients, or those unable to participate in the activity program are unlikely to receive benefit from this intervention.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
Marfan syndrome causes connective tissue fragility that often leads to musculoskeletal problems, marked fatigue, and reduced endurance in young patients. This interventional program enrolls genetically confirmed participants aged 7–17 and uses a baseline cardiopulmonary exercise test (CPET) with VO2 peak measurement at the Reference Centre for Marfan syndrome in Toulouse to tailor a 6‑month adapted physical activity (APA) plan. An APA coach designs activities matched to daily life and interests and provides ongoing support to promote adherence and prevent deconditioning. The primary outcome is change in VO2 peak after six months, with secondary assessments of fatigue and quality of life.
Why it matters
Potential benefit: If successful, the program could increase endurance, reduce fatigue, and improve daily functioning and quality of life for children and adolescents with Marfan syndrome.
How similar studies have gone: A prior study (Marfanpower, NCT03236571) found greatly reduced VO2 peak in young people with Marfan syndrome and showed that an intensive rehabilitation program significantly increased endurance, so this adapted program builds on promising earlier results.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Genetically confirmed Marfan syndrome or related syndrome * Girl or boy aged 7 to 17 * Informed and written consent signed by at least one of the two holders of parental authority * Patient affiliated to a social security scheme or equivalent Exclusion Criteria: * Cardiac contraindications to the APA program: * Severe aortic dilation (aortic diameter \> 45 mm) * and/or left ventricular failure (left ventricular ejection fraction \<45%) * and/or severe mitral leakage ≥ grade 3 * Pregnancy
Where it's running
-
CHU Toulouse
Toulouse, France Recruiting
Study contacts
- Principal investigator: Thomas EDOUARD, MD — University Hospital, Toulouse
- Study coordinator: Thomas EDOUARD, MD
- Email: edouard.t@chu-toulouse.fr
- Phone: 05 34 54 91 95
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.