KS NBS January Newsletter

As of January 2, 2021, the Kansas Newborn Screening Program added two lysosomal storage disorders (LSD) to the blood spot screening panel: Pompe Disease & Mucopolysaccharidoses I (MPS I). With this change, Kansas is now screening for 34 of the 35 conditions on the Recommended Uniform Screening Panel. This screening will be part of the standard blood spot screening conducted shortly after birth. While Kansas is not the first state to add Pompe and MPS I to the blood spot screening panel, it is now one of only 23 states to routinely screen for these two LSDs.

Learn more about these disorders at: https://www.kdheks.gov/newborn_screening/

Gestational Age

Be sure to add the gestational age on the demographic card. This has always been asked for, but is even more important now to have the correct gestational age for proper screening.

What does this change mean for you?

The gestational age provides context to our lab and follow up team to allow proper interpretation of the LSD screening results. This is important because when the lab screens the blood spot samples, they are looking for a specific level of analyte that should be present depending on the gestational age of the child, the time of birth, and the time of collection. Without the correct demographic information, it will slow down the screening process because your facility will need to complete a "Change Request Authorization Form."

Shane Morris joins the Bureau of Family Health as the new Education and Outreach Coordinator. Shane comes to us from the Office of Vital Statistics, where he spent 21 years, with the last 7 years spent educating KS stakeholders on the completion of Kansas records (Birth, death, marriage, etc). Shane will be continuing his work in educating NBS stakeholders on Newborn Screening and Birth Defects Surveillance.

Justin grew up in New Lenox, Illinois and moved to Kansas to attend college at KU. He graduated in 2020 with a bachelor's in Evolutionary, Ecological, and Organismal Biology. He has had a life-long interest in medicine, science, and computers. Prior to the COVID-19 Crisis, Justin volunteered at Lawrence Memorial Hospital, but when he's not working he enjoys cooking, gardening, woodworking, and taking care of his dog and two cats.

Justin Gianares has joined us here at the Kansas Health and Environment Labs as a Microbiologist.

Demographic Card Policy –

Specimen submission forms CANNOT BE AMENDED. It is a legal document and any illegible, blank, or incorrect information on the demographics card will render the specimen “invalid.” Invalid specimens require a repeat screening. This policy change became effective 10/1/2018.

Why is this policy important?

Changes in demographic information on the form can dramatically alter the results of the screening. To increase confidence in reporting, it is imperative that the demographic card is submitted fully and completely, and without changes.

Kansas Newborn Screening Program Policy Change

EVERY facility that collects blood spot screening specimens should have the following tools:

Baby’s First Week poster
Blood Spot Unsatisfactory Codes poster
Newborn Screening brochures in English and Spanish
Timeliness Tips: 24 - 4- 24 poster

If your facility is lacking any of these materials (or need replacements) please reach out to our NBS Public Health Educator: shane.morris@ks.gov or 785-296-8212

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1000 SW Jackson Suite 220 Topeka, KS 66612

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KDHE Newborn Screening Program · 1000 SW Jackson St Ste 220 · Topeka, KS 66612-1274 · USA