Quality Practice Resources
Newborn Screening Surveillance Case Definitions have been developed by the Health Resources and Services Administration (HRSA) in cooperation with the newborn screening medical sub-specialty community, and this process is currently ongoing. The purpose of developing and implementing standard surveillance case definitions for newborn screening conditions is to allow for determination of the true prevalence and incidence of disorders, and comparison of outcomes across states. This establishes a foundation for effective long-term follow up, as most conditions are chronic and require life-long care.
Disorder Specific Activities
NewSTEPs facilitates monthly Technical Assistance (TA) calls for Critical Congenital Heart Disease (CCHD) activities. For more information on CCHD activities and resources please visit the CCHD pages.
NewSTEPs will continue to engage the community and partners in further disease specific outreach activities. Routine updates will be made available here.
Short Term Follow Up
A critical component to the success of newborn screening systems is ensuring that all infants receive appropriate testing and care. NewSTEPs is partnering with state newborn screening programs to provide a central location for Short Term Follow Up resources. Please visit the Short Term Follow Up page for more information.
Newborn Screening Quality Indicators have undergone careful evaluation by stakeholders to assure agreement on definitions. These will be used to provide longitudinal comparisons within a program as well as comparisons to aggregate data across programs. In order to view these as well as sample reports depicting fictional data summaries of the Quality Indicators, please register for an account with the NewSTEPs Data Repository, linked here.
For more information on Case Definitions and Quality Indicators please contact Careema Yusuf at Careema.Yusuf@aphl.org or at (240) 485-2761.
Model practices* specific to Newborn Screening Programs are collected and reviewed by NewSTEPs staff and peers in the community. These are intended to provide ready access to shared practices, communications, protocols, newsletters and more. For practices related to broader public health laboratory activities are available in the Association of Public Health Laboratories Member Resource Center.
*These resources are not necessarily endorsed by NewSTEPs.
NewSTEPs is developing resources for newly added disorders on the Recommended Uniform Screening Panel as well as for activities pertaining to Health Information Technology. Please check back frequently for updates.