PQCNC Optimizing Newborn Screening in North Carolina

2026 Initiatives
Annual Meeting
October 28, 2024
Optimizing Newborn Screening
in North Carolina
Jennifer Lakomiak, NNP, CPNP
Duke Intensive Care Nursery
Special thanks to Kamlesh Athavale, MD, Michael Cotten, MD, Susan Izatt, MD, and Yui-Lin Tang, MD
in their contributions to this presentation
Initiative Background
o Initiation of update to our NICU specific state screening

guidelines
o Reviewed published guidelines in North Carolina State

Laboratory of Public Health (NCSLPH) Scope
Published guidelines on NCSLPH: NCSLPH Scope: Section 4 and 5, page 109
o 4) Premature (gestational age less than 37 weeks or low birth weight of < 2300 grams) or ill
infants receiving parenteral feeding should be screened upon admittance to the special care
baby unit, regardless of age, medical condition, or status of feedings. If the first specimen is
collected at less than 24 hours of age or the infant had a birthweight of < 2000 grams, a
second screen should be collected between 48-72 hours of age. At the 28th day of after birth
or upon discharge, whichever is first, a third specimen should be collected on those infants
whose birthweight was < 2000 grams. Premature or ill infants or infants receiving parenteral
feeding should be screened between 24-72 hours of age. The status of feedings will not affect
this policy. The sample should not be obtained from a central line when an amino acid
solution is being infused.
o 5) All infants less than or equal to 1500 grams (Very Low Birthweight) shall have a repeat
specimen collected at 4-6 weeks of age. If the infant is discharged prior to this time, a repeat
specimen shall be collected at the time of discharge, with an additional repeat specimen
collected at 4-6 weeks of age.
o Surveyed NICUs statewide to determine their specific state screening

guidelines
▪ Identified variance in practice related to total number of screens
sent, timing, collection methods, and follow up of state screens
▪ Identified inconsistencies in following published guidelines
o Discussed state screening practices with NC State Lab

▪ Informed reporting practices for abnormal results when NBS
obtained on admission have changed
▪ Learned NC State Lab interested in revising screening guidelines
with input from expert work group
o Query whether variability similarly exists in testing and follow up of term
newborns
▪ Timing of testing
▪ Method of obtaining sample
▪ Sample submission processes and timing
▪ Provider follow up of abnormal and insufficient samples
▪ Evaluation of patient
▪ Management availabilities
Initiative Aim
Goal:
Creation of an updated and simplified statewide approach to newborn
screening for newborns in NC, focusing on quality improvement in each pillar
needed to maintain a successful newborn screening system (education,
testing, follow up, diagnosis, management, evaluation).
Measures
Potential Measures to track:
• Adherence to guideline in terms of timing of obtaining samples
• Consistent collection methods across all hospitals
• Consistent approach to delivery of samples to state lab
• Timing of sample delivery to state lab
• Number of samples collected and received
• Number of samples needing follow-up
• Number of false negative or false positive sample results
• Consistent approach to follow-up of abnormal or insufficient results of
early screens
• Timing of testing to diagnosis
• Timing of diagnosis to intervention
• Parental satisfaction and support of NBS program
• Staff and provider understanding of NBS systems and guideline
Initiative Reach
Target population:
All newborns born in NC
Families of newborns born in NC
Staff and providers working in NC hospitals, outpatient offices, state lab
Target facilities:
All facilities providing care to newborns in NC
Initiative Impact
• A statewide PQCNC initiative focused on these aims would encourage
stakeholders to work as a team and take ownership in the development
and implementation of an updated state screening guideline. This
guideline would have the potential to:
o Simplify the state screening guideline and lead to easier adoption and more
consistent utilization across centers statewide.
o Minimize the number of potentially unnecessary samples taken from infants,
leading to a decreased workload and cost for the state lab.
o Reduce the number of specialty consults.
o Reduce the number of false positive results, which would reduce the need for
additional state screens and lead to decreased costs, reduction of the number
of painful procedures, and conservation of blood.
o Reduce skin wounds and infection rates.
o Stream-line follow up for early collections throughout the state
o Increase staff knowledge of NBS procedures and protocols.
o Increase parental awareness and satisfaction of state newborn screening.

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2026 Initiatives

o Initiation of update to our NICU specific state screening

o Reviewed published guidelines in North Carolina State

o Surveyed NICUs statewide to determine their specific state screening

o Discussed state screening practices with NC State Lab

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