Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome (M&M's)
Marfan Syndrome
About this trial
This is an interventional prevention trial for Marfan Syndrome
Eligibility 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
Sites / Locations
- CHU Toulouse
Arms of the Study
Arm 1
Experimental
6 month adapted physical activity
The various assessments will be carried out during 2 visits at 6 months interval as part of the usual follow-up at the Toulouse University Hospital. Standard cardiopulmonary exercise test assessment will be coupled with an assessment by an APA coach on the same day. The APA program built from the initial assessment will be returned to the child and his family during a videoconference. In addition, a regular reassessment and adjustment of this program will be made every 15 days during phone calls by the APA coach.