Rare Diseases Clinical Trial
— MarfanPedOfficial title:
Marfan Syndrome: the Impact on the Quality of Life, Phenotypic Manifestations on Self-image and Self-management Skills, as an Index of Adaptation to the Disease in Pediatric Patients
NCT number | NCT05748314 |
Other study ID # | MarfanPed |
Secondary ID | |
Status | Recruiting |
Phase | |
First received | |
Last updated | |
Start date | January 9, 2023 |
Est. completion date | December 2024 |
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: - The assessment of quality of life in MFS Italian patients; - The impact of phenotypic manifestations on self-image and self-management skills; - Stratify patients according to the need of psychological support. Participants will take part in the study by completing four self-report questionnaires.
Status | Recruiting |
Enrollment | 80 |
Est. completion date | December 2024 |
Est. primary completion date | March 31, 2024 |
Accepts healthy volunteers | No |
Gender | All |
Age group | N/A to 18 Years |
Eligibility | Inclusion Criteria: - Signed informed consent; - MFS diagnosis according to Revised Ghent criteria (2010); Exclusion Criteria: - Known cognitive deficits |
Country | Name | City | State |
---|---|---|---|
Italy | IRCCS Policlinico San Donato | San Donato Milanese | Lombardia |
Lead Sponsor | Collaborator |
---|---|
IRCCS Policlinico S. Donato |
Italy,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Psychological counseling | Questionnaire to assess psychological support is KINDL-R (Quality of life); | 12 months | |
Primary | Psychological counseling | Questionnaire to assess psychological support is Multidimensional Self Concept Scale (MSCS) | 12 months | |
Primary | Psychological counseling | Questionnaire to assess psychological support is Morisky Medication Adherence Scale | 12 months |
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