Critical Congenital Heart Disease Newborn Screening Demonstration ProgramÂ
The purpose of the Critical Congenital Heart Disease (CCHD) Newborn Screening Demonstration Program is to support the development, dissemination and validation of screening protocols and newborn screening infrastructure for point of care screening specific to CCHD (i.e., the measurement of blood oxygen saturation as a detection method). The demonstration program must focus on enhancing state screening infrastructure, including the implementation of an electronic health information exchange for reporting and collecting pertinent information from hospitals, as well as the education and training of various stakeholders on testing methodology and follow-up protocols. This announcement solicits applications for activities to: 1) Enhance, improve or expand the capacity of state, local public health agencies and hospitals to: provide screening; counseling; link the results of CCHD screening to needed follow-up health care services; and/or perform the necessary quality assurance, outcomes analysis and other public health surveillance functions; 2) Assist in providing health care professionals and newborn screening program personnel with education in newborn screening and training in relevant new technologies for critical congenital heart disease (such as the use of pulse oximetry); 3) Develop and deliver educational programs (at appropriate literacy levels) about critical congenital heart disease newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and 4) Establish, maintain, and operate a system to coordinate and assess screening programs and follow-up relating to critical congenital heart disease.