Newborn Screening Program
Do you have questions about the Kansas Newborn Screening program? Or maybe you have questions for a laboratory expert? If so, join us on Zoom every Wednesday between 1 pm and 2 pm so you can ask any questions related to the Kansas Newborn Screening program. There is no need to sign up for any of these meetings as they are an "open door" event. See you soon!
Lysosomal Storage Disorders
As of January 2, 2021, the Kansas Newborn Screening Program added two lysosomal storage disorders (LSD) to the blood spot screening panel: Pompe Disease and 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. Lysosomal Storage Disorders are a group of diseases that prevent some cells from breaking down fats and sugars, resulting in cellular damage that leads to a variety of symptoms. Pompe has an incidence rate of 1 in 40,000 and MPS I has an incidence rate of 1 in 100,000.
First Annual Facility Recognition Awards
In partnership with the Kansas Hospital Association and the Kansas Midwives Alliance, the Kansas Newborn Screening Program has created a new recognition program for hospitals, facilities, and midwives who provide newborn screening services. Over 130 facilities and midwives are being honored for their dedication to higher newborn screening standards in 2019.
Birthing facilities and newborn providers can earn top honors in up to five general categories by meeting or exceeding state quality, reporting, and timeliness goals. Three of these categories offer an "honorable mention" recognition for performing better than the state average. Top recognitions went to Kearny County Hospital and Newton Medical Center who were awarded recognition as the "All Around Best of the Best." Ten additional facilities earned a "Best of the Best" designation for either point-of-care screenings (hearing and critical congenital heart defects) or metabolic and genetic screenings.
In response to a 2018 recommendation from the KS-NBS Advisory Committee, the program launched planning to add four new conditions to Kansas' newborn screening panel. In preparation, the program updated quality and timeliness expectations, and birthing facilities, midwives, and primary care providers across the state have worked diligently to retrain staff, update protocols and adapt practices to meet higher newborn screening standards.
Thank you for your hard work and dedication. Congratulations to all the 2019 honorees!
COVID-19 Guidance on Rescreens
Our team has seen an increase in the number of required rescreens as well as some delays in the timeliness of getting rescreens completed. Additionally, feedback from our COVID-19 Facility Survey indicates that several facilities and providers are encountering family resistance to making repeat visits for recollections. In response, we have drafted the following guidance for physicians, birthing facilities, and families.
Please review these documents and share them with your colleagues. Please share the family guidance with patient families early and often. Challenges with repeat collections may decrease as Kansas continues to re-open. Nonetheless, many families may continue to have concerns, which this guide can help to address.
If you have any questions and concerns, you can reach out to our Follow-Up Program Manager, Shawn Manos.
Public Health Service
The Kansas newborn screening program is a collaborative effort between public health, hospitals, providers and the parents of the infants screened. Screening is a public health service. Since 1965, it has been available to all infants in Kansas and it is done shortly after birth.
While most newborns look perfectly healthy, there are some diseases that aren't visible. Unless these diseases are identified and treated early, they can cause severe illness, developmental disability, or in some cases death. To test for these diseases, about 24 hours after birth, a baby's heel is pricked and a small sample of blood is collected by the hospital staff. This blood is then sent to the State public health laboratory where it is tested for several different diseases. If the test is abnormal, re-testing must be done to confirm a diagnosis.
State public health staff are available to notify and assist both providers and parents with the next steps. Most infants with abnormal newborn screening results have normal re-testing. Initial NBS results can be abnormal because the blood was drawn too early, the baby is premature, and many other reasons. When the first screening test indicates a problem may be present, a second screening test is done to determine whether or not the infant needs to have diagnostic testing done. If a baby truly has a disease, a system of providers is available to assist the family with immediate treatment.
Kansas newborns are currently screened for 32 conditions recommended by the Secretary of the Department of Health and Human Services.
- Screening - About 40,000 KS births/initial tests each year with about 2,000 needing retest
- Follow-up - Appropriate health care providers are notified and staff track to assure retesting
- Diagnosis - Newborns with positive screens see medical specialists for a final determination
- Management - Families and their infants receive ongoing care through a medical team
- Education - Information and education are available to families and to providers
- Evaluation - Advisory council oversees program/systems to ensure effectiveness/efficiency
- The Importance of Timeliness
- Thank You for What You Do
Newborn Screening Filter Paper Form
Newborn screening filter paper forms can be ordered by emailing or faxing a completed order form (PDF) to the Kansas Department of Health and Environmental Laboratories' Customer Service department.
Kansas Newborn Screening Program brochures are available for your facility. To request brochures as well as other Newborn Screening educational resources, please email our Newborn Screening Educator.
Report Request Form
Please use the Report Request Form to request additional copies of laboratory reports. One form is required for each patient. The form must be signed, dated, and sent to the Kansas Health and Environmental Laboratories (KHEL) before any changes will be made to the current laboratory report delivery method. Please submit the Report Request Form to the contact info at the bottom of the form.