Next Article in Journal
Assessing the Performance of Dried-Blood-Spot DNA Extraction Methods in Next Generation Sequencing
Previous Article in Journal
Newborn Screening for Cystic Fibrosis in Russia: A Catalyst for Improved Care
Open AccessArticle

Implementing Statewide Newborn Screening for New Disorders: U.S. Program Experiences

1
Center for Public Health Innovation, CI International, Littleton, CO 80120, USA
2
Department of Community and Behavioral Health, Colorado School of Public Health, University of Colorado, Anschutz Medical Campus, Aurora, CO 80045, USA
3
Department of Epidemiology, Colorado School of Public Health, University of Colorado, Anschutz Medical Campus, Aurora, CO 80045, USA
4
Association of Public Health Laboratories, Silver Spring, MD 20910, USA
*
Author to whom correspondence should be addressed.
Int. J. Neonatal Screen. 2020, 6(2), 35; https://doi.org/10.3390/ijns6020035
Received: 22 February 2020 / Revised: 25 April 2020 / Accepted: 28 April 2020 / Published: 30 April 2020
Data were collected from 39 newborn screening (NBS) programs to provide insight into the time and factors required for implementing statewide screening for Pompe, Mucopolysaccharidosis type I (MPS I), adrenoleukodystrophy (ALD), and Spinal Muscular Atrophy (SMA). Newborn screening program readiness to screen statewide for a condition was assessed using four phases: (1) approval to screen; (2) laboratory, follow-up, and information technology capabilities; (3) education; and (4) implementation of statewide newborn screening. Seventeen states (43.6%) reached statewide implementation for at least one new disorder. Those states reported that it took 28 months to implement statewide screening for Pompe and MPS I, 30.5 months for ALD, and 20 months for SMA. Using survival curve analysis to account for states still in progress, the estimated median time to statewide screening increased to 75 months for Pompe and 66 months for MPS I. When looking at how long each readiness component took to complete, laboratory readiness was one of the lengthier processes, taking about 39 months. Collaboration with other NBS programs and hiring were the most frequently mentioned facilitators to implementing newborn screening. Staffing or inability to hire both laboratory and follow-up staff was the most frequently mentioned barrier. View Full-Text
Keywords: newborn screening; new conditions; Pompe; Mucopolysaccharidosis type I (MPS I); X-linked adrenoleukodystrophy (ALD); Spinal Muscular Atrophy; newborn screening readiness newborn screening; new conditions; Pompe; Mucopolysaccharidosis type I (MPS I); X-linked adrenoleukodystrophy (ALD); Spinal Muscular Atrophy; newborn screening readiness
Show Figures

Figure 1

MDPI and ACS Style

Kellar-Guenther, Y.; McKasson, S.; Hale, K.; Singh, S.; Sontag, M.K.; Ojodu, J. Implementing Statewide Newborn Screening for New Disorders: U.S. Program Experiences. Int. J. Neonatal Screen. 2020, 6, 35.

Show more citation formats Show less citations formats
Note that from the first issue of 2016, MDPI journals use article numbers instead of page numbers. See further details here.

Article Access Map by Country/Region

1
Back to TopTop