Marfan and Marfan-related disorder

This pilot study tests whether a carefully supervised ketogenic diet can help people with Marfan syndrome who have a chronic aortic dissection avoid surgery for one year. Fifteen adults aged 18-50 will follow the diet with guidance from a dietitian, measure their blood ketones at…

This study will look at 118 adults with Marfan syndrome to understand why they may not be physically active. Researchers will measure factors like fear of movement, fatigue, pain, and heart health. The goal is to identify what predicts low activity levels, which could help improv…

This study will measure harmful molecules called AGEs in 300 people with various rheumatic diseases (like rheumatoid arthritis and ankylosing spondylitis) and compare them to healthy volunteers. AGEs build up over time and can cause inflammation. Researchers will use a non-invasi…

This study will review medical records of 150 people with Marfan syndrome or Ehlers-Danlos syndrome to understand bone mineralization and fracture risk. Researchers will look at past bone density scans and health data to see how bone health changes over time. The goal is to learn…