Timeliness Toolkit for Expanding Newborn Screening Services

Introduction

The toolkit for expanding newborn screening services was developed by NewSTEPs 360, a collaboration between the Colorado School of Public Health (CoSPH) and the Association of Public Health Laboratories to support states to make improvements in their courier and newborn screening (NBS) laboratory operations. It is designed to assist state NBS programs, advocates, legal, and public health professionals to shape appropriate policies and communicate the value of weekend and holiday courier and laboratory operations in order to improve timeliness in newborn screening.

Each year, 12,000 babies with serious, but treatable conditions grow up healthy because of newborn screening (NBS). NBS is a vital public health program that identifies newborns at risk of developing critical disorders that may not show symptoms at birth but can cause permanent disability or death if not detected and treated in the first few days of life. It is a complex system that involves families, birthing facilities, laboratories, follow-up programs and healthcare providers. Any delay in the newborn screening process may jeopardize the health and survival of affected babies.

In November 2013, the article Deadly Delays in the Milwaukee Journal Sentinel found evidence of serious delays in newborn screening programs across the country due to laboratory closures on weekends and holidays, limited use of courier services to transport samples from hospitals to the NBS lab, and little to no consequences for hospitals that sent late samples.

Over the past 2-4 years, many states have implemented a number of changes in newborn screening practices in order to improve health outcomes for newborns. The most significant of these changes include solutions to address courier transit times and the expansion of NBS laboratory operating hours. In particular, allowing labs to remain open six to seven days per week, greatly increases the lab’s ability to receive and process specimens on the weekends. It has been demonstrated that states who have expanded newborn screening lab hours are more likely to achieve the 95% timeliness reporting goal. For more information, see the 2016 NewSTEPs Timeliness Report submitted to the United States Government Accountability Office. 

The material contained in this toolkit is designed to be customized based on the needs of the individual state or newborn screening program. This is a “living” toolkit that will be modified with new information and materials. For any questions or suggestions of content to add, please contact Sarah McKasson.

Acknowledgements

NewSTEPs 360, a collaboration between the Colorado School of Public Health (CoSPH) and the Association of Public Health Laboratories (APHL) would like to recognize the following partners and state newborn screening programs that generously supported the development of this toolkit.

Mei W. Baker, MD, FACMG, Wisconsin State Laboratory of Hygiene
Janis Biermann, March of Dimes
Natasha Bonhomme, Baby’s First Test of Genetic Alliance
Paige Bussanich, MS, Association of Maternal and Child Health Programs
Melanie Lockhart, March of Dimes
Christi Mackie, Association of State and Territorial Health Officials
Fizza Gulamali-Majid, PhD, Laboratories Administration, Maryland Department of Health
Tonya McCallister, Oklahoma Newborn Screening Lab
Amelia Mulford, Baby’s First Test of Genetic Alliance
Richa Ranade, Association of State and Territorial Health Officials
Jacklyn Seisman, Baby’s First Test of Genetic Alliance
Scott M. Shone, PhD, RTI International
Kate Taft, MPH, Association of Maternal and Child Health Programs
Kelly Umana, Association of Maternal and Child Health Programs

Funding

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UG8MC28554, Improving Timeliness of Newborn Screening Diagnosis, for $1,800,000. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

References
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  9. Health Resources and Services Administration. (2015). Timeliness of Newborn Screening: Recommendations from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. Retrieved June 27, 2018  from: https://www.hrsa.gov/advisory-committees/heritable-disorders/newborn-screening-timeliness.html
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  14. Newborn Screening Technical assistance and Evaluation Program (NewSTEPs). (2016). NewSTEPs Timeliness Report. Final report to the US Government Accountability Office (GAO). Available at: https://www.newsteps.org/sites/default/files/NewSTEPs%20Timeliness%20Report%20to%20GAO_%20Corrected_9-7-16.pdf
  15. Wyoming Department of Health, Women and Infant Health Program & Colorado Department of Public Health and Environment, Newborn Screening Program (2016). Every Hour Counts: Timely collection and transport of newborn screening specimens. [Video/DVD] Denver, Colorado: West Edge Collective.
  16. United States Government Accountability Office (GAO). (2016). Newborn screening timeliness: most states had not met screening goals, but some are developing strategies to address barriers. Report to Congressional Committees No. GAO-17-196.

Sections of Timeliness Toolkit for Expanding Newborn Screening Services