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

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.

Status

Recruiting

Phases

Unknown

Study type

Interventional

Source

ClinicalTrials.gov

Registry ID

NCT05838235

Acronym

M&M's

Enrollment

Registered

2023-05-01

Start date

2023-04-24

Completion date

2028-10-01

Last updated

2026-03-03

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Marfan Syndrome

Brief summary

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.

Detailed description

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.

Interventions

OTHERAdapted Physical Activity program

The Adaptated Physical Activity program will consist of a Personalized Training Program

Study design

Allocation

Intervention model

SINGLE_GROUP

Primary purpose

PREVENTION

Masking

NONE

Eligibility

Sex/Gender

ALL

Age

7 Years to 17 Years

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
Measurement of maximum endurance	At baseline	maximum oxygen consumption (VO2 peak) during a cardiopulmonary exercise test will be measured

Countries

France

Contacts

CONTACTThomas EDOUARD, MD

edouard.t@chu-toulouse.fr05 34 54 91 95

CONTACTFernanda BAJANCA

bajanca.f@chu-toulouse.fr

PRINCIPAL_INVESTIGATORThomas EDOUARD, MD

University Hospital, Toulouse

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Mar 4, 2026