Health care providers will play a vital role in this project. You, or your practice, may have been contacted about participating in this surveillance project.

Congenital Heart Defects (CHD)
Surveillance Project Factsheet
Massachusetts Department of Public Health

What is the CHD Surveillance Project?

As part of the Congenital Heart Futures Act (a component of the Affordable Care Act), the Centers for Disease Control and Prevention (CDC) was given $2 million to study the epidemiology and surveillance of congenital heart defects (CHD) among adolescents and adults, including pregnant women. With a portion of the funding, CDC awarded 3 grants to study this topic and to pilot methods of surveillance of this population. The Massachusetts Department of Public Health, in collaboration with Massachusetts General Hospital, Boston Children’s Hospital, Massachusetts Health Quality Partners and Abt Associates, has been awarded one of the grants to study CHD prevalence across the Commonwealth.

Why is the CHD Surveillance Project Important?

CHD are the most common type of birth defect, affecting between 0.8 and 1% of all newborns. As more patients with CHD survive into adulthood, their health care is becoming more challenging, complex and fragmented. A CHD surveillance system would estimate the prevalence of adults and adolescents with CHD, determine which patients are in care in which settings and examine their long-term outcomes and survival. Surveillance would also provide CHD patient demographics that will be important for workforce planning and appropriate distribution of services and resources. This project will help to inform future care and practice for patients with CHD, as well as help the health care community plan for the future. A subset of the data from this project will be pooled across other CHD Surveillance sites at the CDC.

Which Provider Groups are Being Asked to Participate in the CHD Surveillance Project?

Pediatric and selected adult cardiologists as well as internal medicine and pediatric providers with cardiology subspecialties from across the Commonwealth are being asked to participate in the project. A sample of primary care physicians and obstetricians are also being asked to participate in order to identify patients with CHD not under the care of cardiology providers.

If you are interested in participating or have any questions, please contact:

Julie E. Dunn
MA Center for Birth Defects Research and Prevention
Massachusetts Department of Public Health
250 Washington St. 5th Floor
Boston, MA 02108

This information is provided by the Center for Birth Defects Research and Prevention within the Department of Public Health.