Kansas Newborn Screening Program Expands


New screen for Spinal Muscular Atrophy (SMA) added


TOPEKA – The Kansas Department of Health and Environment’s (KDHE) Kansas Newborn Screening Program (KS-NBS) began screening for Spinal Muscular Atrophy (SMA) on February 1. The Kansas Newborn Screening Program (KS-NBS) strives to protect and improve the health of all newborn Kansans. With one small blood sample, more than 30 life-altering and life-threatening disorders will be detected. These are completely undetectable at birth without this screening. Nearly 35,000 Kansas babies receive the newborn screen shortly after birth each year.


“We are very excited to be able to add SMA to our screening process and directly impact the health and future of our youngest Kansans,” said Dr. Lee Norman, KDHE Secretary.


SMA is a disease affecting the motor neurons in the spinal cord and brainstem. By limiting infant’s physical strength, SMA can take away the ability to walk, eat or breathe. Approximately 1 out of every 11,000 newborns is diagnosed with SMA. About 1 in every 50 Americans is a genetic carrier for SMA.   SMA was added to the federal Recommended Uniform Screening Panel (RUSP) for newborn screening in 2018. Evidence shows that early diagnosis and treatment leads to better outcomes.


“Since 2016, we have safe, effective and FDA-approved treatments that are dramatically changing the natural history of this disease,” says Dr. Britton Zuccarelli, a pediatric neurologist in Salina and a member of the Advisory Council for Newborn Screening. “Affected children are achieving motor and other milestones we never would have anticipated based on the severity type and are living to ages without invasive respiratory support that are unprecedented in this condition.  With over a dozen other investigational drugs in the SMA pipeline, our options for treatment for this rare neurological condition are only going to continue to grow, and early recognition is paramount.  With 1/40 to 1/60 of us Kansans being carriers of this disease, newborn state screening is important and will change the lives of babies, children, adults and families across Kansas.”


For more information on Kansas’s Newborn Screening Program, visit: www.kdheks.gov/newborn_screening/index.html.

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