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$5.4 Million Grant Creates National Collaboration to Save Babies Lives through Improvements in Newborn Screening

July 8, 2015

AURORA, Colo. (July 8, 2015) – Named one of the 10 greatest public health achievements of the 20th century, newborn screening is routinely performed in the United States on more than 4 million newborns annually and saves or improves the lives of more than 12,000 babies. For newborns who may screen positive for one of the genetic, metabolic, heart or hearing conditions, newborn screening can prevent serious health problems or even death. The Colorado School of Public Health (ColoradoSPH), in collaboration with the Association of Public Health Laboratories (APHL), is pleased to announce $5.4 million in support from the U.S. Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau that will be used to create an unprecedented national collaboration called NewSTEPs 360 to fund state newborn screening programs across the nation.

NewSTEPs 360 will expand upon the infrastructure of NewSTEPs, an existing partnership between ColoradoSPH and APHL, and will result in one of the largest national formal collaborations of newborn screening stakeholders. NewSTEPs 360 aims to take a 360 degree view of the newborn screening system to implement novel solutions to improve timeliness. The collaboration includes the following stakeholders:

  • Newborn Screening Clearinghouse (Baby’s First Test) housed at Genetic Alliance
  • National Institute for Children’s Health Quality (NICHQ)
  • Association of State and Territorial Health Officials (ASTHO)
  • Association of Maternal Child Health Programs (AMCHP)
  • March of Dimes (MOD)
  • National Coordinating Center for Regional Genetics Collaboratives (NCCRGC) housed at the American College of Medical Genetics (ACMG)
  • Newborn Screening Translational Research Network (NBSTRN) housed at ACMG
  • OZ Systems

The cooperative agreement will support a unique national collaboration to fund state newborn screening programs that will identify local barriers to timely newborn screening, and then help states to strategize and implement solutions using continuous quality improvement approaches.

"We can really shift the field of newborn screening with this project because the NewSTEPs 360 partnerships combined with innovative approaches from state newborn screening programs will provide a catalyst for powerful quality improvement in newborn screening,” said Marci Sontag, PhD, director of NewSTEPs 360 and associate professor of Epidemiology at the Colorado School of Public Health.

“Newborn screening remains among one of the most successful public health programs in the United States.” Newborn screening is a comprehensive system that includes laboratory testing, point-of-care screening, diagnosis, follow-up, treatment, education, and evaluation services. Infants with genetic conditions identified early receive time-critical treatments in the first days and weeks of life, averting serious, and sometimes fatal, outcomes. The timely identification and diagnosis of affected infants is of utmost importance, yet unaddressed challenges in the screening system can lead to delays that may result in tragic consequences for affected newborns.

"Our top priority is to partner with state public health departments to strengthen their newborn screening programs and provide the best services for the babies,” added Jelili Ojodu, MPH, director of the Newborn Screening and Genetics program at APHL and director of NewSTEPs. “For many of these disorders, an hour or two can make the difference in changing an outcome for a newborn.”

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, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

About the Colorado School of Public Health
The Colorado School of Public Health is a collaborative, multi-disciplinary, multi-institutional, learning, research and service environment, and is the first and only accredited school of public health in the Rocky Mountain Region. Collaboratively formed in 2008 by the University of Colorado, Colorado State University, and the University of Northern Colorado, the Colorado School of Public Health provides training, innovative research and community service to actively address public health issues including chronic disease, access to healthcare, environmental threats, emerging infectious diseases, and costly injuries. Learn more and follow ColoradoSPH’s updates on Facebook, Twitter and Instagram.