Actively Recruiting

Phase Not Applicable
Age: 7Years - 17Years
All Genders
ID05838235

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

Age: 7Years - 17Years
All Genders

Eligibility Criteria

Eligible

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
Not Eligible

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

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Adapted Physical Activity Program

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

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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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