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N.C. Newborn Screening Program awarded federal grant; celebrates advances in early detection and awareness

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RALEIGH — The North Carolina Department of Health and Human Services Newborn Screening Program has been awarded a federal grant that supports enhancements to the state’s newborn screening system. This funding is intended to improve health outcomes for newborns and children with disorders identified through newborn screening, and will improve access to treatment and follow-up care for babies born in North Carolina.

Each year, more than 200 babies in North Carolina are identified with rare genetic or biochemical disorders through newborn screening, which is done through a blood test performed on samples taken from each newborn infant in North Carolina. Studies have shown the importance of early identification and treatment, which can be lifesaving for the most severe cases.

The NBS Propel federal grant, awarded by the U. S. Health Resources and Services Administration, will provide $1.7 million over five years to support continued advances in early detection of genetic or biochemical disorders, as well as the follow-up programs that help families navigate treatment options. This work will be a collaboration between NCDHHS and RTI International.


“Our Newborn Screening Program will use this grant to improve data systems, expand educational activities, and enhance our laboratory and follow-up procedures,” said Dr. Scott Shone, director of the State Laboratory of Public Health at NCDHHS. “This work supports the Department’s family and child well-being priority by improving the health of newborns throughout the state for years to come.”

Recently, the NCDHHS Newborn Screening Program began screening for several new conditions, including MPS I and Pompe Disease in 2023, X-Linked Adrenoleukodystrophy (X-ALD) in 2022 and Spinal Muscular Atrophy (SMA) in 2021. The Newborn Screening Follow-up Program, in partnership with the UNC Division of Genetics & Metabolism, ensures babies identified with abnormal newborn screening results receive follow-up care and referrals to the appropriate medical specialists.

For more information, visit NCDHHS Newborn Screening Services.