Congenital heart disease (CHD) is a heart condition that a patient is born with, and affects 8/1000 live births making it the most common congenital birth defect. It can encompass abnormalities in the rhythm of the heart, as well as a wide array of structural heart problems. These problems can range from mild (never requiring cardiac surgery), to severe (requiring multiple different stages of open heart surgeries). CHD can involve abnormal or absent chambers, holes in the heart, abnormal connections in the heart, and abnormalities in the function or squeeze of the heart. Most congenital heart conditions affect patients from childhood through adulthood. Given the differences and complexity in patients with CHD, there has been ongoing controversy surrounding the need for comprehensive screening for these diseases in fetal life, the newborn period, in collegiate and competitive athletics, and in patients taking certain medications. Furthermore, there have been discussions surrounding those patients that are known to have congenital heart disease, and the timing of their continued surveillance with pediatric cardiologists and adult congenital cardiology specialists.
More research, consensus and cost effective analysis is required to determine the validity and need for global screening tests. As screening tests vary in their sensitivity for detecting overall disease as well as their specificity for detecting specific diseases, understanding the context of when to use a screening test and how to interpret the results can be difficult. Understanding whether populations would benefit from screening for congenital heart diseases or rhythm abnormalities, the timing of such tests, the likelihood of finding a truly positive result versus repercussions of falsely positive results are areas that need to be carefully researched. Additionally, analysis of screening studies in diverse populations are needed to determine global applicability, cost effectiveness, and need for screening studies in different life stages. Lastly, understanding timing of surveillance for patients with known congenital heart lesions as well as streamlining which tests are needed is necessary to optimize medical care. Consensus amongst the CHD experts and pediatric cardiac associations concentrating in congenital heart disease needs to be reached in both the areas of screening for CHD and surveillance of patients known to have CHD. Research and cost effective analysis will be crucial in this process.
Screening and Early Identification
Congenital Heart Public Health Consortium Webinar Series
The Congenital Heart Public Health Consortium Webinar series is a four-part series that serves to share information regarding the Consortium's direction and the role it plays in public health for persons living with a congenital heart defect. The Webinars will provide an overview of the Consortium and cover key issues in one of the its focus areas: databases, lifelong care, and public health framework.
Congenital Heart Defect Advances Webinar series: From Screens to Teens and Beyond
The American Academy of Pediatrics Webinar series, Congenital Heart Defect Advances: From Screens to Teens and Beyond, is a three-part series that covers advances in both the science and care management of young patients with a congenital heart defect and tackles questions about newborn screening, care transition for older youth, and the nuances of neurodevelopmental outcomes.
Adult Congenital Heart Association (ACHA) Webinars
The ACHA conducts Webinars for patients and professionals on a monthly basis. The current schedule is available on the ACHA Web site.
Newborn Screening Recommendations for Critical Congenital Heart Disease (CCHD): Implications for State Programs
webinar presented by AMCHP
Early Identification of Congenital Heart Defects: Information for Primary Care Providers webinar presented by the Congenital Heart Public Health Consortium (CHPHC)