Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension

The Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Program is enrolling patients to help advance the study of congenital heart defects:

• The International Multicenter Tetralogy of Fallot Registry (INDICATOR) was established in 2008 with the goal of discovering the risks that lead to adverse outcomes in people with repaired tetralogy of Fallot (TOF). Drs. Anne Marie Valente and Tal Geva are founding members of the core INDICATOR lab at Boston Children's Hospital, and their work with four other medical institutions has led to several publications highlighting risk factors before and after pulmonary valve replacement in these patients.
• Pregnancy studies: STORCC (Standardized Outcomes in Reproductive Cardiovascular Care) is a joint program through the BACH team and maternal fetal medicine team at Brigham and Women's Hospital, under the direction of Dr. Katherine Economy. It was established in 2011 with a goal of standardizing the diagnostic testing for patients with heart disease desiring pregnancy. The registry is one of the largest single-center prospective registries in the U.S.: more than 750 pregnancies in patients with CHD. Publications resulting from these studies have improved care delivery, including a published protocol for cardiovascular care during pregnancy, outcomes based on the timing and mode of delivery, and the safety of exercise in pregnant patients with cardiac conditions. The team is enrolling patients in a study assessing hemodynamics in pregnant patients with right ventricular outflow tract lesions.
• Cognitive and mental health studies: We have a multidisciplinary research group focused on long-term cognitive and mental health outcomes in adult patients with CHD. Our studies have been funded by the National Institutes of Health and other sources. We gather information on neuropsychological testing, mental health evaluations, and brain imaging, among other data. We also collect genetic information to help us understand the underpinnings of differences between patients. Publications and presentations from this work are helping inform the long-term care of our adult congenital patients and will help us think about potential future interventions.
• Transition to adult care: Our adult congenital heart team has strong partnerships within the Benderson Family Heart Center to improve how we help patients and families transition care to adult-oriented providers within the center. We have participated in multiple studies looking at barriers to transition education of patients and parents. We are working closely with pediatric cardiologists and nursing staff on implementing quality improvement efforts to help patients successfully reach this next step of care.