HUB FOR NEWBORN
by Sikha Singh, MHS, manager, NewSTEPS
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.
• Data repository and interactive website:
The new data repository and interactive
website will be developed in the winter
of 2012, with initial testing in the spring
of 2013 and debut of the NewSTEPs data
system at the Joint Meeting of the Newborn
Screening and Genetic Testing Symposium
and the International Society for Neonatal Screening scheduled for May 2013, in
Mission: To achieve the highest quality for newborn screening systems by
providing relevant, accurate tools and resources and to facilitate collaboration
between state programs and other newborn screening partners.
Vision: Dynamic newborn screening systems have access to and utilize
accurate, relevant information to achieve and maintain excellence through
continuous quality improvement.
• Data collection efforts: In 2013, with the
new case definitions and updated quality
indicators agreed upon by states, the new
data repository will accept data from 2012
How: NewSTEPs is funded through a five-year cooperative agreement to 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.
• Technical assistance and site visits:
Technical assistance teams will be available
for site visits this winter. NewSTEPs looks
forward to visiting state NBS programs and
working together to improve the newborn
Where: NewSTEPs will serve as a central link for access to newborn screening information, data and resources across the country.
• Case definitions: NewSTEPs is working
with state volunteers to develop uniform
surveillance case definitions of NBS
conditions for harmonization across
programs for national monitoring of
children’s health outcomes.
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.
For additional information on NewSTEPs,
contact Sikha Singh at 240.485.2726 or Sikha.
Singh@aphl.org. To learn about the program,
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
Director of Epidemiology: Marci Sontag, PhD
Program Evaluator: Yvonne Kellar-Guenther, PhD
• NewSTEPs Steering Committee (chaired by Scott Shone, PhD) u