ClinicalTrials.gov record NCT05838235

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

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Sep 6, 2026

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.

About this page. This page shows the study's official ClinicalTrials.gov record ↗, with added help to make it easier to understand. We explain medical terms, highlight key details in plain language, and suggest questions you may want to ask the study team.

The record is periodically copied from ClinicalTrials.gov and may lag behind changes. AI summaries are checked by software, not a clinician.Read moreShow less

The official record is written by the study sponsor and published on ClinicalTrials.gov. It may not always reflect the latest changes. Before making any decisions, please confirm important information with the study team and your own healthcare team.

Where you see "AI summary", AI was used to create a plain-language explanation and software checked it against the source. It has not been reviewed by a clinician, so it may contain mistakes or leave out important details.

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.

Study typeInterventionalA study in which researchers assign participants to one or more interventions, such as a drug, procedure, device, behavioural programme or other approach, to measure their effects.

Age7 years old to 17 years old

SexAll

LocationFrance

AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This interventional study gives a personalized 6‑month adapted physical activity (APA) program to children and teenagers with Marfan syndrome. Endurance will be measured by a cardiopulmonary exercise test (VO2 peak) before and after the program, and quality of life will be assessed. An APA coach designs the program after an initial assessment and adjusts it by phone every 15 days.

What it is studying. The study tests whether a 6‑month personalized adapted physical activity program affects endurance (measured as maximum oxygen consumption, VO2 peak, on a cardiopulmonary exercise test) and related quality-of-life measures in children and adolescents with Marfan syndrome.

What the researchers hope to learn. To measure change in maximum oxygen consumption (VO2 peak) after 6 months of an adapted physical activity program and to evaluate associated endurance and quality-of-life outcomes.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

This research study aims to evaluate the effect of a 6-month adapted physical activity program (APA) on the endurance capacities (evaluated as the maximum oxygen consumption [VO2 peak] on a cardiopulmonary exercise test) of children and adolescents with Marfan syndrome or related.

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other: Adapted Physical Activity program

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

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

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Detailed description from the registry

Marfan syndrome (MFS) is characterized by the association of multisystem damage related to connective tissue fragility. The risk of aortic dissection has diverted attention from significant musculoskeletal damage despite commonly reported extreme fatigue and pain with impact on the patient's quality of life. In a recent study (Marfanpower, NCT03236571), investigators have observed reduced endurance capacities in children and teenagers with MFS (average VO2 peak at 60% of expected), which were significantly increased by an intensive rehabilitation program. Based on this experience, investigators aim to evaluate the effect of a physical activity program adapted to the daily life of the young patients on their endurance capacities and their quality of life. This program will be set up by an adapted physical activity (APA) coach after a complete assessment, including a cardiopulmonary exercise test with VO2 peak measurement, which will be carried out in the Reference Centre for Marfan syndrome at the Toulouse University Hospital. The VO2 peak evolution will be evaluated after 6 months of program. This is a recognized parameter for the evaluation of endurance and has been validated in children. Investigators hypothesize that the implementation of a physical activity program adapted to the daily life and interests of the child with MFS will efficiently improve endurance, prevent deconditioning and promote long term benefits.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Two study visits about six months apart that include a cardiopulmonary exercise test measuring maximum oxygen consumption (VO2 peak) and an assessment by an adapted physical activity (APA) coach. The coach creates a personalized training program and delivers it to the child and family by videoconference. The coach will reassess and adjust the program by phone every ~15 days during the six-month period. Participation involves following the adapted activity plan and attending the scheduled tests and coaching contacts.

How the study is structured. This is a single-group, non-masked interventional study. Participants receive a personalized 6‑month adapted physical activity program created after an initial assessment with a cardiopulmonary exercise test and an APA coach. The program is returned to the family via videoconference and is reassessed and adjusted by the coach every 15 days by phone. Key measurements (including VO2 peak) are taken at the start and after about 6 months.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

The listed sites are in France. Is any of them reachable for me, and does the study help with travel?
Which of the eligibility criteria would need to be checked with tests before I could join?

More on Marfan syndrome

Clinical trials20 trials listed for Marfan syndromeEvery trial the registry lists for Marfan syndrome, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in Marfan syndrome researchLatest monthly update: September 2026. Includes: After open aortic repair. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start: Apr 24, 2023
Primary completion: April 2028 (estimated)
Study completion: October 2028 (estimated)
Target enrollment: 30 participants (estimated)
Last updated on registry: Mar 3, 2026
Data verified: Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor: University Hospital, Toulouse

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Thomas EDOUARD, MD 📞 05 34 54 91 95 ✉ edouard.t@chu-toulouse.fr
Fernanda BAJANCA ✉ bajanca.f@chu-toulouse.fr

Participating sites (1)

CHU ToulouseRecruiting
Toulouse · France
- Thomas EDOUARD, MD · edouard.t@chu-toulouse.fr

Terms used on this page · explanations by MedicalUpdates.ai

contraindications: A reason a particular test or treatment should not be used for a person, for example a metal implant that rules out an MRI scan.
Inclusion Criteria: The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria: The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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