Background: Newborn Screening (NBS) must occur in a timely manner to effectively reduce morbidity and mortality. The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) has been concerned with the issue of timely NBS in the United States. After an initial report in January 2014 based on survey data, discussions with experts and review of pertinent literature, the ACHDNC recommended a series of timeliness activities related to NBS. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) has worked over the past two years to develop a network, collect data from NBS programs and analyze quality practices within programs. NewSTEPs 360 is the result of a competitive funding opportunity that sought to support state newborn screening programs to improve timeliness. This activity will be completed under the umbrella of a Collaborative Improvement and Innovation Network (CoIIN). Key elements of a CoIIN include: 1) reliance on distance-based technology for all team activities; 2) expectation of rapid, on-going communication across all levels of the team; and 3) commitment to ensuring that work processes are transparent.
Goal: To support states through technical and financial means so that they can achieve timely reporting of results in 95% of newborns that receive dried-blood spot (DBS) newborn screening. For this project “timely” reporting follows ACHDNC’s recommendations and is as follows:
- Presumptive positive results for time-critical conditions should be communicated immediately to the child’s healthcare provider but no later than the fifth day of life.
- All presumptive positive results for all other conditions should be communicated to the child’s healthcare provider as soon as possible but no later than seven days of life.
- All NBS results should be reported within seven days of life.
In order to achieve these goals and reduce delays in newborn screening:
- Initial NBS specimens should be collected in the appropriate time frame for the baby’s condition but no later than 48 hours after birth.
- NBS specimens should be received at the Laboratory as soon as possible; ideally within 24 hours of collection.
Objective: NewSTEPs 360 will facilitate teams to engage in quality improvement through shared collaborative learning of evidence-based strategies for improvement of timeliness within NBS, contributing to improved health outcomes. NewSTEPs 360 will work with the states newborn screening system to help enable the collection of data needed to enable the states to build on current activities to develop and implement quality improvement practices/activities aimed at addressing timeliness in state newborn screening programs. The data generated from NewSTEPs 360 will be used by states to improve timeliness around newborn screening. As a result, the lessons learned from NewSTEPs 360 will be shared with a variety of audiences.
For all educational resources relative to NewSTEPs 360 ahd archived webinars, including Cystic Fibrosis Quality Improvement Timeliness Webinar meetings, please visit the NewSTEPs resource library.
For any questions regarding NewSTEPs 360 please contact Sarah McKasson.