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
Status: Active_not_recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
SUMMARY
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.
Eligibility
Participation Requirements
Sex: All
Maximum Age: 18
Healthy Volunteers: f
View:
• Signed informed consent;
• MFS diagnosis according to Revised Ghent criteria (2010);
Locations
Other Locations
Italy
IRCCS Policlinico San Donato
San Donato Milanese
Time Frame
Start Date: 2023-01-09
Completion Date: 2026-05
Participants
Target number of participants: 80
Related Therapeutic Areas
Sponsors
Leads: IRCCS Policlinico S. Donato