Vol. 8, No. 3
March 2016

Iowa joins national cohort to save babies’ lives

The Iowa Newborn Screening Program is one of 20 state programs chosen for NewSTEPs 360, a national initiative to save the lives of babies by reducing the time from birth to identification of serious and often life-treating conditions.

New steps logo.

NewSTEPs 360 is a collaboration between the Colorado School of Public Health and the Association of Public Health Laboratories. It was created by the Health Resources and Services Administration of the U.S. Department of Health and Human Services to help states shorten the time from when blood drops are collected, received and processed by the laboratory until results are reported.

The newborn screening process begins when five drops of blood are collected from the baby’s heel, generally between 24 and 48 hours after birth. The ultimate goal of the Iowa NewSTEPs plan is for 95 percent of all specimens to reach the laboratory for screening within 60 hours of birth, much more quickly than the national goal of five days.

Approximately four million babies are born each year in the United States. About 12,000 of these infants have rare but serious conditions. Of the nearly 40,000 babies born in Iowa each year, approximately 70 infants may have one of these potentially devastating conditions. The Iowa program also provides screening for about 13,000 babies born in North Dakota and South Dakota each year.

A 2013 Milwaukee Journal Sentinel investigative report cited the Iowa Newborn Screening Program – administered by the Iowa Department of Public Health – as a national leader in timeliness.

Iowa was the first state to create a courier system that collects blood spot specimens from birthing facilities around the state, and delivers them the same day to the State Hygienic Laboratory in Ankeny. The laboratory works year around – including weekends and holidays – to detect time-critical conditions.

Follow-up staff at the University of Iowa Children’s Hospital also are available seven days a week to notify health care providers of presumptive positive results, and relay information about any of the 50 hereditary conditions screened for by the state.

NewSTEPs 360 is supported by $5.4 million dollars in funding from the Health Resources and Services Administration. It provides quality improvement training, individualized coaching for each state and the analysis of real-time data that impacts changes in selected state programs.

Also partnering in this first-ever national initiative are the Newborn Screening Clearinghouse (Baby’s First Test) housed at Genetic Alliance; the National Institute for Children’s Health Quality; the Association of State and Territorial Health Officials; the Association of Maternal Child Health Programs; March of Dimes; the National Coordinating Center for Regional Genetics Collaboratives and the Newborn Screening Translational Research Network, both housed at the American College of Medical Genetics; and OZ Systems.

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 UG8MC28554 - Improving Timeliness of Newborn Screening Diagnosis in the amount of $5.4 million. This information or content and conclusions are those of the author and should not be construed as the official position or policy of HRSA, HHS or the U.S. Government.