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Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome — MYLIFE  

Marfan Syndrome Clinical Trial

Official title:
Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome: an Observational, Prospective and Multicenter Study

Clinical Trial 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 Education Program (TEP) intervention, then a phase of evolution analysis of at least 3 months.

Clinical Trial 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 characterize the functional impact in patients, to verify the reproducibility of our evaluations, and to evaluate the spontaneous evolution of the parameters over a period of 3 months. During the second phase of evolution analysis, the quality of life will be assessed at 3 month intervals (M9, M12) after the therapeutic Education Program (M6). The comparison between the evolution during the two phases, before and after the TEP will allow us to assess the benefits of the TEP. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT04731493
Study type Observational
Source University Hospital, Toulouse
Contact
Status Active, not recruiting
Phase
Start date December 2, 2020
Completion date January 31, 2024
View Details
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