Status:
UNKNOWN
Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome
Lead Sponsor:
University Hospital, Toulouse
Conditions:
Marfan Syndrome
Eligibility:
All Genders
7-25 years
Brief Summary
This is a before-after, observational, prospective, multicenter cohort study. The study will consist of 2 phases: an initial observational phase of a minimum of 3 months before the Therapeutic Educati...
Detailed Description
During the first observational phase, the quality of life assessment will be carried out 3 months apart without intervention. The data obtained during this first phase will make it possible to charact...
Eligibility Criteria
Inclusion
- Patient aged between 7 and 25 years old with Marfan Syndrome or related according to Ghent criteria
- For minors, no oral opposition from the holders of parental authority and consent of the minor.
- For adults, no oral opposition collected
- Patient affiliated to a social security scheme or equivalent
Exclusion
- Inability of the patient to understand the content of the TEP sessions or the questionnaire about quality of life (non-French speaking, severe intellectual disability)
- Patient who has already participated in a TEP session for his pathology.
- Protected adult: patient under legal guardianship or curator protection
Key Trial Info
Start Date :
December 2 2020
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
January 31 2024
Estimated Enrollment :
60 Patients enrolled
Trial Details
Trial ID
NCT04731493
Start Date
December 2 2020
End Date
January 31 2024
Last Update
February 1 2021
Active Locations (1)
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1
UHToulouse
Toulouse, France, 31000