Ignite Creation Date:
2024-05-06 @ 6:41 PM
Last Modification Date:
2024-10-26 @ 2:52 PM
Study NCT ID:
NCT05748314
Status:
RECRUITING
Last Update Posted:
2024-03-05
First Post:
2023-01-26
Brief Title:
Marfan Syndrome and Quality of Life of Pediatric Patients
Sponsor:
IRCCS Policlinico S Donato
Organization:
IRCCS Policlinico S Donato
Study Overview
Official 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
Status:
RECRUITING
Status Verified Date:
2024-03
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
MarfanPed
Brief 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
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
Detailed Description:
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
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
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None