Marfan Syndrome and Quality of Life of Pediatric Patients

Launched by IRCCS POLICLINICO S. DONATO · Feb 24, 2023

Keywords

ClinConnect Summary

This clinical trial is focused on understanding how Marfan syndrome (MFS) affects the quality of life in children and teenagers. Researchers want to find out how MFS impacts things like self-image, self-management skills, and whether patients need psychological support. To do this, participants will fill out four questionnaires that will help gather information about their experiences living with Marfan syndrome.

If you or your child has been diagnosed with Marfan syndrome and meets certain criteria, you may be eligible to participate in this study. Specifically, participants need to have signed consent and a diagnosis of MFS based on established guidelines. However, if there are known cognitive difficulties, the individual won't be able to join the study. This research is currently looking for participants of all genders, aged up to 74, and aims to provide insights that could improve support and resources for those living with this condition.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Signed informed consent;
• • MFS diagnosis according to Revised Ghent criteria (2010);
• Exclusion Criteria:
• • Known cognitive deficits