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
Location: See location...
Intervention Type: Other
Study Type: Interventional
Study Phase: Not Applicable
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.
Eligibility
Participation Requirements
Sex: All
Minimum Age: 7
Maximum Age: 17
Healthy Volunteers: f
View:
• 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
Locations
Other Locations
France
CHU Toulouse
RECRUITING
Toulouse
Contact Information
Primary
Thomas EDOUARD, MD
edouard.t@chu-toulouse.fr
05 34 54 91 95
Backup
Fernanda BAJANCA
bajanca.f@chu-toulouse.fr
Time Frame
Start Date: 2023-04-24
Estimated Completion Date: 2028-10
Participants
Target number of participants: 30
Treatments
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.
Related Therapeutic Areas
Sponsors
Leads: University Hospital, Toulouse