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 Newborn Screening Status: Map of the screening status of newborn screening disorders in the US.
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:
- The Addition of CCHD to the Recommended Uniform Screening Panel (RUSP) (October 15, 2010)
- Response Adopting Recommendation to Add CCHD to the RUSP (September 21, 2011)
- Response to October 15, 2010 Letter Regarding CCHD (April 20, 2011)
- For information shared during recent ACHDNC meetings relative to CCHD, please visit the ACHDNC meeting wepage.