Marfan Syndrome and Quality of Life of Pediatric Patients
NCT05748314 · Status: ACTIVE_NOT_RECRUITING · Type: OBSERVATIONAL · Enrollment: 80
Last updated 2025-09-10
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.
Conditions
- Rare Diseases
- Pediatric Disorder
Interventions
- OTHER
-
Questionnaire
KINDL-R; Morisky Medication Adherence Scale;
Sponsors & Collaborators
-
IRCCS Policlinico S. Donato
lead OTHER
Principal Investigators
-
Alessandro Pini, MD · Cardiovascular-Gentic Centre, IRCCS Policlinico San Donato
Eligibility
- Max Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2023-01-09
- Primary Completion
- 2025-12-31
- Completion
- 2026-05-31
Countries
- Italy
Study Locations
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