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Posted on: February 12, 2024

KDHE Announces Expansion of Newborn Screening Program

For Immediate Release Graphic

New screen for X-Linked Adrenoleukodystrophy (X-ALD) added.

The Kansas Department of Health and Environment’s (KDHE) Kansas Newborn Screening Program (KS-NBS) began screening for X-Linked Adrenoleukodystrophy (X-ALD) at the start of the month. The move aligns with the Recommended Uniform Screening Panel, which is the national guideline for newborn screening. 

“We are very excited to be able to add testing for X-ALD to our screening process,” Janet Stanek, KDHE Secretary, said. “This will have a direct and positive impact on the health and future of our youngest Kansans.” 

Nearly 35,000 Kansas babies receive the newborn screening shortly after birth each year. With one small blood sample, 33 metabolic and genetic conditions can be detected. Early diagnosis and entry into treatment has demonstrated evidence of better health outcomes for children. Many of the conditions on the screening panel are not detectable at birth or during routine follow-up visits. 

According to multiple sources, it is estimated that one out of every 15,000 newborns is diagnosed with X-ALD. X-ALD is a disease that affects the nervous system and the adrenal cortex. If untreated, X-ALD can impact learning and behavior in boys, with onset typically occurring between the ages of 4 and 10. 

The KS-NBS strives to protect and improve the health of all newborns in Kansas. Visit kdhe.ks.gov/NewbornScreening to learn more about the program. More information on tests included in newborn screenings can be found at Babys First Test. For specific information on X-ALD, visit  ALD Parents Guide.

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