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

NCT04731493 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 60

Last updated 2021-02-01

No results posted yet for this study

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.

Conditions

  • Marfan Syndrome

Interventions

OTHER

Therapeutic Education Program

* needs assessment * educational group workshop * specialized workshops by age group: child / adolescent / transition / adult / entourage / separated parents and in parallel * socio-administrative workshop * individual summary (accompanied or not by his entourage / family) * satisfaction questionnaire

Sponsors & Collaborators

  • University Hospital, Toulouse

    lead OTHER

Principal Investigators

  • Yves DULAC, MD · University Hospital, Toulouse

Eligibility

Min Age
7 Years
Max Age
25 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2020-12-02
Primary Completion
2024-01-31
Completion
2024-01-31

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04731493 on ClinicalTrials.gov