title: Lessons Learned From Newborn Screening for Critical Congenital Heart Defects.
abstract: Newborn screening for critical congenital heart defects (CCHD) was added to the US Recommended Uniform Screening Panel in 2011. Within 4 years, 46 states and the District of Columbia had adopted it into their newborn screening program, leading to CCHD screening being nearly universal in the United States. This rapid adoption occurred while there were still questions about the effectiveness of the recommended screening protocol and barriers to follow-up for infants with a positive screen. In response, the Centers for Disease Control and Prevention partnered with the American Academy of Pediatrics to convene an expert panel between January and September 2015 representing a broad array of primary care, neonatology, pediatric cardiology, nursing, midwifery, public health, and advocacy communities. The panel's goal was to review current practices in newborn screening for CCHD and to identify opportunities for improvement. In this article, we describe the experience of CCHD screening in the United States with regard to: (1) identifying the target lesions for CCHD screening; (2) optimizing the algorithm for screening; (3) determining state-level challenges to implementation and surveillance of CCHD; (4) educating all stakeholders; (5) performing screening using the proper equipment and in a cost-effective manner; and (6) implementing screening in special settings such as the NICU, out-of-hospital settings, and areas of high altitude.
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia; Children's Healthcare of Atlanta, Emory University, Atlanta, Georgia; osterm@kidsheart.com.
authors.forename: Matthew E
authors.initials: ME
authors.lastname: Oster
authors.affiliation: Johns Hopkins University School of Medicine, Baltimore, Maryland;
authors.forename: Susan W
authors.initials: SW
authors.lastname: Aucott
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia;
authors.forename: Jill
authors.initials: J
authors.lastname: Glidewell
authors.affiliation: Pomona Pediatrics PC, Pomona, New York;
authors.forename: Jesse
authors.initials: J
authors.lastname: Hackell
authors.affiliation: Children's Healthcare of Atlanta, Emory University, Atlanta, Georgia;
authors.forename: Lazaros
authors.initials: L
authors.lastname: Kochilas
authors.affiliation: Children's National Health System, Washington, District of Columbia;
authors.forename: Gerard R
authors.initials: GR
authors.lastname: Martin
authors.affiliation: Vanderbilt University School of Nursing, Nashville, Tennessee;
authors.forename: Julia
authors.initials: J
authors.lastname: Phillippi
authors.affiliation: Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah;
authors.forename: Nelangi M
authors.initials: NM
authors.lastname: Pinto
authors.affiliation: Newborn Foundation|Newborn Coalition, Saint Paul, MN;
authors.forename: Annamarie
authors.initials: A
authors.lastname: Saarinen
authors.affiliation: Colorado School of Public Health, University of Colorado Anschutz Medical Center, Aurora, Colorado; and.
authors.forename: Marci
authors.initials: M
authors.lastname: Sontag
authors.affiliation: Duke Clinical Research Institute and Department of Pediatrics, Durham, North Carolina.
authors.forename: Alex R
authors.initials: AR
authors.lastname: Kemper
mesh_terms: D000465:Algorithms; D003362:Cost-Benefit Analysis; D006330:Heart Defects, Congenital / Q000175:diagnosis*; D006801:Humans; D000860:Hypoxia / Q000175:diagnosis / Q000209:etiology; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000191:economics / Q000379:methods; D010092:Oximetry / Q000191:economics; D062486:Public Health Surveillance; D013219:State Government; D014481:United States