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Preliminary findings of a regional approach to critical congenital heart disease newborn screening implementation
Methods: A coordinating council comprising representatives from public health, pediatrics, pediatric cardiology, health educators, March of Dimes, family advocates, perinatal nurses and screening was formed to guide and evaluate this project. Nine birthing facilities were recruited to implement CCHD screening and collect and report screening results.
Results: States are in various stages of implementing CCHD screening, and differences in public health authority to oversee programs exist. A Tier 2 educational brochure has been developed for parents of a baby who receives a positive screen. To date, 16,024 babies have been screened; there have been 11 with positive screens (7 per 10,000) and 2 have been diagnosed with CCHD (1.2 per 10,000).
Discussion: Differences among states in the way disorders are added to their screening panel, and the wording of legislation has impeded public oversight of CCHD newborn screening programs. A regional approach to implementing CCHD screening allows the sharing of resources and expertise across states.
Learning Areas:
Administration, management, leadershipConduct evaluation related to programs, research, and other areas of practice
Epidemiology
Ethics, professional and legal requirements
Program planning
Learning Objectives:
Describe the process for adding a condition to the Recommended Uniform Screening Panel.
List benefits and challenges to a regional approach in implementing critical congenital heart disease newborn screening.
Keyword(s): Maternal and Child Health, Policy/Policy Development
Qualified on the content I am responsible for because: I am the principal investigator of a federally funded grant focusing on the implementation of critical congenital heart disease newborn screening in five New England states. Among my scientific interests have been the evaluation of population-based screening tests and genetic testing.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.