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Clinical Trials in Italy / NCT05748314
Active, not recruiting Observational

Marfan Syndrome and Quality of Life of Pediatric Patients

NCT05748314 · tracked via the Priya Life Science Italy tracker
Sponsor
IRCCS Policlinico S. Donato
Phase
Observational
Started
2023-01-09
Last updated
2026-07-02

Condition(s) studied

Rare DiseasesPediatric Disorder

Investigational drug(s) / intervention(s)

Questionnaire

Questionnaire: KINDL-R; Morisky Medication Adherence Scale;

Study 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

Sex
ALL
Min age
—
Max age
18 Years
Healthy volunteers
No
Inclusion Criteria: * Signed informed consent; * MFS diagnosis according to Revised Ghent criteria (2010); Exclusion Criteria: * Known cognitive deficits

Primary outcome measure(s)

Trial sites (1)

FacilityCityRegionStatus
IRCCS Policlinico San Donato San Donato Milanese Lombardy

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Other trials for the same condition

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Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT05748314 on ClinicalTrials.gov ↗ ← All trials in Italy