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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| therapeutic Education Program | individual and group sessions will be set up with educational workshops specialized by age group (child / adolescent / transition / adult / entourage / parents), socio-administrative workshops, etc. The objectives will be adapted to each age group and to each patient individually. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Therapeutic Education Program | Other |
|
| Measure | Description | Time Frame |
|---|---|---|
| quality of life of children and young adults with Marfan | Answer to the question of PedsQL | Base line |
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | Answer to the question of PedsQL | 3 months |
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | Answer to the question of PedsQL | 9 months |
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | Answer to the question of PedsQL | 12 months |
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Inclusion Criteria:
Exclusion Criteria:
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Patient with Marphan Syndrom
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| Name | Affiliation | Role |
|---|---|---|
| Yves DULAC, MD | University Hospital, Toulouse | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| UHToulouse | Toulouse | 31000 | France |
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| ID | Term |
|---|---|
| D008382 | Marfan Syndrome |
| ID | Term |
|---|---|
| D001848 | Bone Diseases, Developmental |
| D001847 | Bone Diseases |
| D009140 | Musculoskeletal Diseases |
| D006330 | Heart Defects, Congenital |
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|
| D018376 | Cardiovascular Abnormalities |
| D002318 | Cardiovascular Diseases |
| D006331 | Heart Diseases |
| D000015 | Abnormalities, Multiple |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D030342 | Genetic Diseases, Inborn |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |