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. Information is insight. By collecting data of patients with the rare conditions, our experts hope to acquire insights on treatment and diagnoses and more fully understand the underpinnings of the conditions.
Why is a Trisomy 13/18 registry important?
Clinical data from patients can improve our understanding of these conditions. For one, the information could help us understand complications that patients can expect. Data could also help researchers and clinicians create new treatments, assess which therapies are more effective than others, determine predictors of disease stability, and better see patterns in the recurrence of Trisomy-related conditions and the role of genetics.
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