APHL is committed to ensuring that the four million babies born in the US each year all receive accurate, timely screening for genetic and metabolic disorders. In response to the Milwaukee Journal Sentinel's 2013 series citing delays in delivery of newborn screening specimens to state laboratories, the association is working with newborn screening partners to improve coordination and timeliness across the newborn screening system. Partners include state health laboratories, newborn screening follow-up programs, hospitals, physicians groups, federal and state health agencies.
Initiative to Improve Timeliness of Newborn Screening
In 2015, APHL launched a pilot Collaborative Improvement and Innovation Network to assist state health programs to improve the timeliness of newborn screening within their jurisdictions. Managed through the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), a HRSA initiative supported by APHL, this technical assistance has already produced positive results.
NewSTEPs works with state newborn screening systems to facilitate data collection to inform development of quality improvement practices/activities aimed at addressing timeliness. It also connects newborn screening specialists across states to support information sharing. Lessons learned will be reported as interim findings and in a final report.
Other Activities to Advance Newborn Screening
APHL has acted to address timeliness and improve the overall quality of the nation's newborn screening system in other ways. It has:
- Convened newborn screening partners to initiate a comprehensive review of laboratory aspects of the newborn screening system
- Collaborated with the Department of Health and Human Services Discretionary Advisory Committee on Heritable Disorders in Newborns and Children to develop updated recommendations on timeliness
- Urged passage of the
Newborn Screening Saves Lives Reauthorization Act. The Act provides support for newborn screening services at the state and federal level
- Surveyed state health laboratories to assess newborn screening practices, including sample delivery time and tracking
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Trained hospital staff and nurses in collection, handling and transport of samples with emphasis on the importance of rapid delivery of samples to the lab
Access a training.
- Shared best practices in tracking of sample deliveries with state health laboratory staff
- Recognized the efforts of state programs during the Newborn Screening and Genetic Testing Symposium
APHL continues to support newborn screening proficiency testing, evaluation of emerging technologies and implementation of quality practices pertaining to screening, confirmation and results reporting.
State Action
States have made significant progress toward meeting goals for transport and processing of newborn screening specimens. Public health laboratories, as the entities responsible for analysis of newborn screening specimens, have helped lead these initiatives in states across the US. Examples include:
Arizona: 99% of bloodspot specimens arriving within one day of collection as of May 2014. Actions included: Partnered with state’s hospital and healthcare association, conducted hospital site visits, obtained funding for daily courier service to conduct hospital pickups. Continues to provide hospitals with detailed reports on performance.
Arkansas: 50% of specimens delivered within 48 hours by mid-year 2014 to lab compared with 15% in 2013. Actions included: Distributed emails and newsletters to stakeholders, posted reminders to health department Facebook site before holidays re. use of same-day or overnight delivery, developed/shared resources and information, visited hospitals, consulted via phone, and provided quarterly status reports to hospitals and letters to hospital administrators.