Living With Marfans and Your Aorta: Surgical Outcomes Study

Launched by BARTS & THE LONDON NHS TRUST · Feb 25, 2021

Keywords

ClinConnect Summary

The "Living With Marfans and Your Aorta: Surgical Outcomes Study" is a clinical trial focused on understanding how heart surgery affects the mental health and overall quality of life of adults with Marfan Syndrome (MFS). MFS is a genetic condition that can lead to serious heart problems, particularly issues with the aorta, which is the large artery that carries blood from the heart. This study aims to gather important information that can help improve support and care for patients before and after they undergo aorto-vascular surgery.

To be eligible for this study, participants must be at least 18 years old, have a confirmed diagnosis of Marfan Syndrome, and be scheduled for a specific type of heart surgery. If you participate, you will complete several questionnaires that assess your health and well-being—before your surgery and again at intervals afterward. This will help researchers understand how surgery impacts both your physical health and your emotional well-being. The study is currently recruiting participants from three large cardiac centers in the UK, and it aims to shed light on the challenges and needs of those living with Marfan Syndrome.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. \>/= 18 years old at the time of surgery;
• • 2. have validated diagnosis of MFS (using revised Ghent criteria);
• • 3. having aorto-vascular surgery
• Exclusion Criteria:
• • 1. \<18years old at the time of surgery
• • 2. Unable or unwilling to give written informed consent.
• • 3. Inability to understand written and/or verbal English