Critical Congenital Heart Disease (CCHD) Stakeholders Meeting
On September 21, 2018 a one-day stakeholder meeting on Screening for Critical Congenital Heart Disease (CCHD) was held in Washington D.C. at the American College of Cardiology Heart House. This meeting followed the path of previous stakeholder meetings with the purpose of recapping and building upon recent successes and accomplishments. The goal was to be able to discuss next steps to improve CCHD screening and capture the improved detection. It was an inclusive meeting with many of the original stakeholders and the advocates that made this possible. The American Academy of Pediatrics (AAP) Section on Cardiology & Cardiac Surgery, American College of Cardiology (ACC), the American Heart Association (AHA) and the Association of Public Health Laboratories’ (APHL) NewSTEPs CCHD Technical Assistance work group were present at the meeting as well as key representatives from government agencies, hospitals, parent organizations, industry and others.
The goal of adding CCHD screening to the Federal Newborn Screening Recommended Uniform Screening Panel was to aid in nationwide adoption of this screen. In September 2018 we reached our goal as Idaho became the final state to require CCHD screening. Now all 50 states and the District of Columbia have mandates or public health oversight of CCHD screening. U.S. implementation, in conjunction with the recent JAMA manuscript published in December of 2017, demonstrating a 33% reduction in CCHD infant deaths associated with states that had early screening mandates, is a tremendous accomplishment! This could not have been realized without the efforts and work of many organizations and individuals.
With any population screening program, there is much more work to be done. A Scientific Committee under the guidance of the Joint Council of Congenital Heart Disease developed an agenda for the meeting. The morning focused on presentations about screening achievements, next steps and future needs. The afternoon was an open discussion with all stakeholders on identifying gaps in screening.
For more information on this meeting please contact Lisa Hom at lhom@childrensnational.org