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Newborn Screening and Genetics

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Newborn Screening Technical assistance and Evaluation Program (NewSTEPs)
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What: NewSTEPs (Newborn Screening Technical assistance and Evaluation Program) is a national newborn screening project designed to provide data, technical assistance and training to newborn screening programs across the country and assist states with quality improvement initiatives. NewSTEPs is a comprehensive resource center for state newborn screening programs and stakeholders.

How: NewSTEPs is funded through a five-year cooperative agreement to the Association of Public Health Laboratories (APHL) by the Genetic Services Branch of the Health Resources and Services Administration (HRSA).

Why: NewSTEPs functions with the goal of improving outcomes for newborns by facilitating newborn screening initiatives and programmatic outcomes, thus improving the overall quality of the newborn screening system. State programs will benefit from the shared resources that NewSTEPs will offer, including a data repository, interactive website, technical assistance, education and training, policy guidance and program evaluation.

Where: NewSTEPs is the central link for access to newborn screening information, data and resources across the country.

Who: To facilitate the efforts described, our staff includes newborn screening staff from APHL and faculty from the Colorado School of Public Health (CSPH) who provide expertise in epidemiology and evaluation. APHL also looks forward to collaborating with state newborn screening programs and stakeholders in the newborn screening community.

APHL

  • Director: Jelili Ojodu, MPH
  • Senior Advisor: Jane Getchell, DrPH
  • Manager: Sikha Singh, MHS, PMP
  • Senior Specialist: Careema Yusuf, MPH
  • Specialist: Thalia Wood, MPH
  • Newborn Screening and Genetics in Public Health Liaison: Elizabeth Jones, MPH

CSPH

  • Associate Director: Marci Sontag, PhD
  • Program Evaluator: Yvonne Kellar-Guenther, PhD

Highlights of Activities

  • Data repository and Interactive Website: The new data repository and interactive website is now available at https://www.newsteps.org.
  • Data collection efforts: In Fall 2013, with the new case definitions and updated quality indicators agreed upon by states, the new data repository will be accepting data from 2012 and onwards.
  • Technical assistance and site visits: NewSTEPs has kicked off Technical Assistance Visits.  Please see the NewSTEPs website at https://www.newsteps.org to learn more on how to request a site visit.  We are looking forward to visiting state NBS programs and working together to improve the newborn screening systems.
  • Case Definitions: Working with state volunteers to develop and refine uniform surveillance case definitions of NBS conditions for harmonization across programs for national monitoring of children’s health outcomes.

NewSTEPs Data Repository FAQs

What happens to the historical data that has previously been captured?
NewSTEPs has all of the data prior to June 1, 2012, and this will be available for longitudinal comparisons. However, as a result of the HRSA funded National Newborn Screening Information System (NNSIS) activity having ended, NewSTEPs will not have access to data that has been entered into other repositories after June 1, 2012.

What should states do while the NewSTEPs data repository is being developed?
The anticipated live date of the NewSTEPs data repository is Fall 2013. In the interim, we recommend that you retain your data and NewSTEPs will facilitate uploading all saved information when the repository becomes available.

What is the benefit of my entering data into the NewSTEPs data repository?

  • The NewSTEPS data repository will be a centralized and secure database that can be accessed by authorized users from anywhere and allow each NBS program to explore data to meet local program needs.
  • NBS programs that enter data into the NewSTEPs repository will have access to their own data plus aggregate data from other participating NBS programs.
  • NBS programs will be able to generate standardized reports based on their data to develop quality improvement initiatives.
  • Standardized Case Definitions and Quality Indicators will be integrated into the NewSTEPs data repository.

Who do I contact with additional questions regarding the NewSTEPs data repository?
To facilitate the efforts described, our multi-disciplinary staff includes newborn screening staff from APHL and faculty from the Colorado School of Public Health (CSPH). Careema Yusuf, MPH, Senior Specialist is the staff lead for all data related activities.