newborn screening
NewSTEPs 360 Convenes Cystic Fibrosis Newborn
Screening Stakeholders
by Sikha Singh, MPH, PMP, manager, NewSTEPs 360 and Sarah McKasson, MPH, professional research assistant, NewSTEPs 360
U
niversal newborn screening (NBS) for cystic fibrosis (CF) has been
in place in the US since January 2010, affording all children the
opportunity for early intervention and diagnosis. However, significant
variability exists in the implementation of CF newborn screening within each
state, resulting in a range in the median age of diagnosis from five days of
age to over 30 days of age, as reported to the Cystic Fibrosis Foundation (CFF)
National Patient Registry. Data has demonstrated that earlier intervention
through timely newborn screening can result in improved linear growth
in the first month of life for newborns with CF, giving each infant the best
opportunity for optimal lung growth and lung health.
NewSTEPs 360, in collaboration with the CFF, recently proposed a Cystic
Fibrosis Newborn Screening Timeliness Initiative with the goals of bringing
together key stakeholders in CF newborn screening programs. As a part of
this initiative, on June 21-22, laboratory and follow-up staff from state NBS
programs joined CF clinicians in Denver, CO for the Cystic Fibrosis Newborn
Screening Quality Improvement and Timeliness Meeting.
Including staff, 116 attendees from 40 states represented the following areas of
the newborn screening system:
• National partners (n=5)
• NewSTEPs/360 staff (n=12)
• CF Center/Providers (n=37)
• Genetic Counselor (n=1)
• Health Department/NBS program (n=2)
• NBS Follow-up (n=31)
• NBS Lab (n=28)
Meeting participants shed light on the successes of the NewSTEPs 360 quality
improvement initiative and the importance of continuing to offer technical
assistance in support of newborn screening.
NewSTEPs 360 assists state newborn screening programs to improve
timeliness through continuous quality improvement, technical assistance and
financial means. A HRSA-funded initiative, NewSTEPs 360 works in support
of recommendations by the Secretary’s Advisory Committee on Heritable
Disorders in Newborns and Children.
During the two-day meeting, state NBS programs worked with representatives
from CF Centers to identify strategies for implementation of quality
improvement initiatives to assure timely screening for CF. A true community of
practice working together toward a unified goal emerged from the discussions.
CF Quality Improvement Initiative Meeting Objectives
1. Consider the ACHDNC’s recommendations on timeliness
in newborn screening in the context of CF NBS quality
improvement.
3. Identify quality improvement initaitives in CF NBS.
4. Develop interactive state teams working collaboratively
toward a uniform goal.
2. Understand data elements collected in national repositories
pertaining to CF NBS.
20
LAB MATTERS Summer 2016
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