This research study will be open for enrollment in 2026. Parents and guardians may register their child for participation and provide their child’s information directly, or your child may be able to be enrolled through a research team member at the medical center where your child is seen. A list of participating medical centers will be available in 2026.
Overview
The Benderson Family Heart Center at Boston Children’s Hospital has created a data registry for patients with the chromosomal conditions Trisomy 13 and Trisomy 18. By collecting data from children with these rare conditions, our experts hope to acquire insights on optimal surgical and non-surgical treatments and learn more about these children’s abilities in the long term.
Why is a Trisomy 13/18 registry important?
Clinical data from children with Trisomy 13 or 18 can improve our understanding of these conditions. The information could help us understand complications that patients can expect. Information contributed to the registry over time could also help researchers and clinicians understand the role of cardiac surgery in improving outcomes for these children, and help identify factors that are associated with later physical functioning, quality of life, and general well-being.
Trisomy 13/18 Registry Leadership
Christopher Baird, MD
Boston Children's Hospital
Department of Cardiac Surgery
Lynn Sleeper, ScD
Boston Children’s Hospital
Department of Cardiology