Research Areas

Newborn Screening

Congenital Heart Disease Newborn Screening Program

The Congenital Heart Disease Newborn Screening Program continues to provide leadership in research, advocacy, education and the implementation of newborn screening for critical congenital heart disease (CCHD). Since the 2011 publication of best practices for implementing CCHD screening in pediatrics, screening is now required in 48 states and the District of Columbia. With a focus on collaboration and advocacy, the team has worked with families, the American Academy of Pediatrics (AAP), the March of Dimes, the American College of Cardiology and the American Heart Association on the passage of the Healthy Hearts of Babies Act of 2015. This legislation, which took effect in September 2015, requires CCHD screening in the District of Columbia.

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Unresolved Issues in Newborn Screening: Quantifying the Harms of a False Positive Result

The National Institute of Child Health and Human Development (NICHD) and the National Human Genome Research Institute (NHGRI) have funded Beth Tarini, M.D., and her team to comprehensively examine the scope, magnitude and risk factors for harms to both children who receive false positive newborn screening (NBS) results and their families. This project involves a prospective multistate cohort study of infants who undergo NBS and their parents. It will provide the most comprehensive data to-date on post-screening harms for children with false positive NBS results.

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