Congenital Heart Disease Epidemiology in the United States: Blindly Feeling for the Charging Elephant
Congenital heart disease (CHD) is the most common of all congenital defects, affecting nearly 1% of live births. Creative operative and catheter-based interventions have facilitated survival to adulthood with nearly all defects, setting the stage for a rapidly growing population of adolescents and adults with CHD (ACHD). Although the field of ACHD remains in its infancy, it is important to acknowledge the tremendous achievements in the United States and abroad over the last decades. ACHD publications have almost exponentially increased (Figure 1). The first ACC/AHA joint guidelines on diagnosis and management of ACHD were published in 2008 with a revision anticipated this fall, subspecialty status in cardiology was granted by the American Board of Medical Specialties in 2012 with the first qualifying examination offered last fall, and the first class of American Council for Graduate Medical Education-approved fellowship training begins July 2016. Multicenter and multinational research collaborations have formed including the Alliance for Adult Research in Congenital Cardiology - AARCC, as have patient/provider collaborative organizations, such as the ACHA - the Adult Congenital Heart Association and ISACHD - the International Society of ACHD. Funding for research has also improved, led by the U.S. Department of Defense, the American Heart Association and the National Heart, Lung and Blood Institute.
- Received June 2, 2016.
- Revision received June 10, 2016.
- Accepted June 10, 2016.