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The report from the National Academies highlights gaps and proposes stronger coordination for U.S. newborn screening programs
RESEARCH TRIANGLE PARK, N.C. — A new report from the National Academies of Sciences, Engineering, and Medicine (NASEM) and co-authored by RTI International’s Don Bailey, Ph.D., finds that U.S. newborn screening programs need stronger national coordination to improve performance and keep pace with emerging technologies.
While the foundation of the newborn screening system remains strong, the report says that national leadership and coordinated research will be needed to take advantage of new therapies, such as gene therapy, and new screening methods, such as genome sequencing, for rare disorders. The varied approaches taken by programs in 56 states and territories can lead to inconsistencies in implementation, resource allocation and public engagement. Greater alignment and collaboration across these programs may help address current and emerging challenges, the authors note.
“Newborn screening has saved lives for decades but is under-resourced and has limited research capabilities, and inconsistencies in implementation are limiting its potential,” said Bailey, a Distinguished Fellow at RTI, an independent scientific research institute. “We found a need for more oversight to streamline practices, protect public trust and ensure all newborns benefit equally from scientific advances.”
Newborn screening reaches 98% of the 3.6 million infants born each year. Early testing for conditions such as congenital hypothyroidism, cystic fibrosis, and sickle cell disease allows for timely treatment and care, identifying more than 7,000 infants annually who benefit from early intervention.
The report recommends a 10-year strategic plan to unify screening efforts nationwide. It also recommends establishing a universal performance improvement system, forming a research network to expand evidence for new screening targets, and enhancing public awareness of all aspects of newborn screening.
The full report, titled “Future Directions for the National Newborn Screening System,” is available via NASEM.
Read the full report
Learn more about RTI’s capabilities related to newborn screening
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