This post was authored by Ami Bhatt, MD, FACC, member of the Adult Congenital and Pediatric Cardiology Section.

In 1949, the National Institutes of Health began funding research in congenital heart disease (CHD). Since then, not only has the field grown, but the patients have aged successfully, introducing new frontiers for CHD research. As the field of cardiology has advanced impressively in the past four decades, the field of CHD has steadily grown and research efforts are now abundant. In addition to single center and multicenter academic efforts, collaboration with patient advocacy organizations and privately funded foundations has helped move research and registries forward. However, the time for an increase in the advancement of scientific inquiry is beginning now.

At the national level, there is now significant support for CHD research efforts. The U.S. Center for Disease Control and Prevention (CDC) has a pilot project to expand public health tracking of CHD across patient lifespans. It is the first population based tracking system for adolescents and adults with congenital heart defects. The New York State Department of Health, Emory University in Atlanta, Georgia, and the Massachusetts Department of Public Health have joined to better understand the survival, health care use and longer term outcomes of adolescents and adults with CHDs. An important sub-focus of the project is the assessment of pregnancy outcomes in CHD – a research area which has been well established with the support of birth defect registries.

Meanwhile, the Pediatric Heart Network has been supported by the National Heart, Lung, and Blood Institute (NHLBI) for 13 years and studies ranging from single ventricle medical and surgical therapy to the “Bench to Bassinet Program” continue to provide novel insights into the effects of our therapies, genetic influences on outcome and potential new targets for treatment. Outcomes research in adult CHD has now taken center stage, and risk factor modification in children and adolescents with and without CHD is receiving equal attention. Promoting health literacy in order to decrease rates of loss to follow up, through studying provider, patient and family perceptions of longitudinal needs, continues to be successful at increasing awareness of the need for lifelong care. The emphasis on lifelong care has extended to important non-cardiac issues including neurocognitive impairment, anxiety, depression and quality of life.

Importantly, in this fiscally challenging and changing time, cost effectiveness, practice variation and quality improvement are areas in which the adult congenital and pediatric cardiology community is now leading by example.

The CDC recently convened the Congenital Heart Disease Public Health Consortium, also supported by the NHLBI as another avenue to bring together CHD stakeholders, including federal advisers. CHD leaders recognize longitudinal studies are essential to understanding the genetic underpinnings, natural history and the effects of therapies over time. In a field such as CHD, where practitioners interact so fluidly while providing care across the spectrum of age – from fetal assessment to geriatrics and all life events in between – longitudinal registries are a natural and necessary next step in improving CHD care. The challenge as we enter this phase of research is to develop our own feedback mechanism across the lifespan and use the information we collect to make meaningful change in our current and future patients’ lives.

< Back to Listings