Critical Congenital Heart Disease (CCHD)

Critical Congenital Heart Disease (CCHD) Newborn Screening was added to the Recommended Uniform Screening Panel (RUSP) in September of 2011. CCHD is the second point of care newborn screen to be added to the RUSP, joining early hearing loss.

NewSTEPs partners with state newborn screening programs and federal agencies interested in CCHD to provide a central location for CCHD resources. If you have additional resources that you would like included, please contact Erin Darby.  

CCHD Technical Assistance (TA) Webinar

NewSTEPs hosts quarterly CCHD TA webinars to address the needs of stakeholders in the states and in screening programs with topics including data collection and interpretation, quality improvement, NICU challenges, screening in the home-birth population and more. Please contact Erin Darby with ideas or suggestions for future calls.

Legislative Updates

The latest updates on CCHD newborn screening bills for each state are developed by the Newborn Coalition. The Network for Public Health Law provides insightful legal assistance, helpful resources and opportunities to build connections for local, tribal, state and federal officials; public health practicitioners; attorneys; policy-makers; and advocates.

Data Collection

The collection of data from pulse oximetry screening will help to ensure all babies are screened and receive appropriate follow-up following an abnormal screen. Evaluation of the programs and the algorithm also requires data collection at the public health level. NewSTEPs collects outcome data on CCHD newborn screening, including quality indicators and basic information about the cases diagnosed with CCHD. Specific data to be collected can be found in the NewSTEPs Data Repository.

Educational Resources

NewSTEPs has compiled educational resources from the community that can be used to support screening efforts in other states and regions. For educational resources, pertinent publications and archived webinars please visit the NewSTEPs resource library and filter for CCHD.

Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Recommendations

Related Resources

NewSTEPs Critical Congenital Heart Disease (CCHD) National Webinar
12:00 pm EDT | October 15, 2020
Add to Calendar 2020-10-15 12:00:00 2020-09-29 11:49:10 NewSTEPs Critical Congenital Heart Disease (CCHD) National Webinar In 2011, Critical Congenital Heart Disease (CCHD) screening was added to the U.S. Recommended Uniform Screening Panel (RUSP). Since then, all 50 states have passed laws or established newborn screening programs, making CCHD screening the standard of care in the U.S. A stakeholder work group including representatives from American Heart Association (AHA), American College of Cardiology (ACC) and APHL met in Washington, DC, in 2018 to review the evidence and recommended streamlining the current nationally recommended algorithm. This webinar provides an opportunity to engage and discuss the new recommendations with the authors of a manuscript recently published in PEDIATRICS that contain the recommendations from the stakeholder meeting. Implications for public health programs, rationale for the recommended changes and remaining data collection and educational opportunities will all be addressed.   Register here:  Location NewSTEPs America/New_York public