Loeys-Dietz syndrome pediatric research and clinical trials

At Boston Children's Hospital, our care is informed by our research, and our discoveries in the laboratory strengthen the care we provide at each child's bedside. Children’s scientific research program is one of the largest and most active of any pediatric hospital in the world. In particular, our efforts are focused on:

New treatments for heart wall defects

Pedro del Nido, MD, chief of Cardiac Surgery, and his colleagues are developing surgical instruments to enable beating heart surgical repair of the atrial septal defects common in children born with Loeys-Dietz syndrome. These specialized devices will allow minimally invasive repairs inside the beating heart that are not currently possible.

Clinical trials that could provide clues about strengthening the aorta

In a 2006 study, the blood pressure medication losartan completely prevented aortic aneurysms in mice with Marfan syndrome. Ron Lacro, MD, director of Boston Children's Cardiovascular Genetics Clinic, managed a clinical trial to assess the effectiveness of losartan on children and young adults with Marfan syndrome. This study also holds great promise for children with Loeys-Dietz who also suffer from this weakening of the aorta. 

We’re also continually involved in research with physicians and researchers in other institutions in an attempt to provide the most up-to-date and effective care for children with Loeys-Dietz syndrome.