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The goal of this observational study is to learn about the impact of Marfan syndrome (MFS) in paediatric affected subjects. the main questions it aims to answer are:
In literature, adolescents with MFS experience difficulty in connecting with peers, and are convinced that they would have been more physically attractive without the disease. Additionally, due to physical activity restrictions and orthopedic limitations, these patients reported having difficulty adjusting and participating in educational events.
Data from present study will be able to support clinicians in identifying patients who need psychological support (through parental counseling interviews) aimed at increasing compliance with treatments and adaptation to the disease.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Questionnaire | Other | KINDL-R; Morisky Medication Adherence Scale; |
| Measure | Description | Time Frame |
|---|---|---|
| Psychological counseling | Questionnaire to assess psychological support is KINDL-R (Quality of life); | 12 months |
| Psychological counseling | Questionnaire to assess psychological support is Multidimensional Self Concept Scale (MSCS) | 12 months |
| Psychological counseling | Questionnaire to assess psychological support is Morisky Medication Adherence Scale | 12 months |
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Inclusion Criteria:
Exclusion Criteria:
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Subjects with clinical and/or genetic diagnosis od MFS currently in follow up at Cardiovascular Genetic Centre, IRCCS Policlinico San Donato
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| Name | Affiliation | Role |
|---|---|---|
| Alessandro Pini, MD | Cardiovascular-Gentic Centre, IRCCS Policlinico San Donato | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| IRCCS Policlinico San Donato | San Donato Milanese | Lombardy | 20097 | Italy |
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| ID | Term |
|---|---|
| D035583 | Rare Diseases |
| ID | Term |
|---|---|
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |