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Early Check: translational science at the intersection of public health and newborn screening.

Publication ,  Journal Article
Bailey, DB; Gehtland, LM; Lewis, MA; Peay, H; Raspa, M; Shone, SM; Taylor, JL; Wheeler, AC; Cotten, M; King, NMP; Powell, CM; Biesecker, B ...
Published in: BMC pediatrics
July 2019

Newborn screening (NBS) occupies a unique space at the intersection of translational science and public health. As the only truly population-based public health program in the United States, NBS offers the promise of making the successes of translational medicine available to every infant with a rare disorder that is difficult to diagnose clinically, but for which strong evidence indicates that presymptomatic treatment will substantially improve outcomes. Realistic NBS policy requires data, but rare disorders face a special challenge: Screening cannot be done without supportive data, but adequate data cannot be collected in the absence of large-scale screening. The magnitude and scale of research to provide this expanse of data require working with public health programs, but most do not have the resources or mandate to conduct research.To address this gap, we have established Early Check, a research program in partnership with a state NBS program. Early Check provides the infrastructure needed to identify conditions for which there have been significant advances in treatment potential, but require a large-scale, population-based study to test benefits and risks, demonstrate feasibility, and inform NBS policy.Our goal is to prove the benefits of a program that can, when compared with current models, accelerate understanding of diseases and treatments, reduce the time needed to consider inclusion of appropriate conditions in the standard NBS panel, and accelerate future research on new NBS conditions, including clinical trials for investigational interventions.Clinicaltrials.gov registration # NCT03655223 . Registered on August 31, 2018.

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Published In

BMC pediatrics

DOI

EISSN

1471-2431

ISSN

1471-2431

Publication Date

July 2019

Volume

19

Issue

1

Start / End Page

238

Related Subject Headings

  • Translational Research, Biomedical
  • Self-Help Groups
  • Public Health
  • Prospective Studies
  • Program Evaluation
  • Pediatrics
  • Patient Selection
  • Outcome Assessment, Health Care
  • North Carolina
  • Neonatal Screening
 

Citation

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Bailey, D. B., Gehtland, L. M., Lewis, M. A., Peay, H., Raspa, M., Shone, S. M., … Zimmerman, S. J. (2019). Early Check: translational science at the intersection of public health and newborn screening. BMC Pediatrics, 19(1), 238. https://doi.org/10.1186/s12887-019-1606-4
Bailey, Donald B., Lisa M. Gehtland, Megan A. Lewis, Holly Peay, Melissa Raspa, Scott M. Shone, Jennifer L. Taylor, et al. “Early Check: translational science at the intersection of public health and newborn screening.BMC Pediatrics 19, no. 1 (July 2019): 238. https://doi.org/10.1186/s12887-019-1606-4.
Bailey DB, Gehtland LM, Lewis MA, Peay H, Raspa M, Shone SM, et al. Early Check: translational science at the intersection of public health and newborn screening. BMC pediatrics. 2019 Jul;19(1):238.
Bailey, Donald B., et al. “Early Check: translational science at the intersection of public health and newborn screening.BMC Pediatrics, vol. 19, no. 1, July 2019, p. 238. Epmc, doi:10.1186/s12887-019-1606-4.
Bailey DB, Gehtland LM, Lewis MA, Peay H, Raspa M, Shone SM, Taylor JL, Wheeler AC, Cotten M, King NMP, Powell CM, Biesecker B, Bishop CE, Boyea BL, Duparc M, Harper BA, Kemper AR, Lee SN, Moultrie R, Okoniewski KC, Paquin RS, Pettit D, Porter KA, Zimmerman SJ. Early Check: translational science at the intersection of public health and newborn screening. BMC pediatrics. 2019 Jul;19(1):238.
Journal cover image

Published In

BMC pediatrics

DOI

EISSN

1471-2431

ISSN

1471-2431

Publication Date

July 2019

Volume

19

Issue

1

Start / End Page

238

Related Subject Headings

  • Translational Research, Biomedical
  • Self-Help Groups
  • Public Health
  • Prospective Studies
  • Program Evaluation
  • Pediatrics
  • Patient Selection
  • Outcome Assessment, Health Care
  • North Carolina
  • Neonatal Screening