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. 2022 Nov;46(7):151642.
doi: 10.1016/j.semperi.2022.151642. Epub 2022 Jun 10.

Early neurodevelopmental follow-up in the NICHD neonatal research network: Advancing neonatal care and outcomes, opportunities for the future

Howard W Kilbride  1 , Betty R Vohr  2 , Elisabeth M McGowan  2 , Myriam Peralta-Carcelen  3 , Kimberlly Stringer  3 , Abhik Das  4 , Stephanie Wilson Archer  5 , Susan R Hintz  6
Affiliations

Early neurodevelopmental follow-up in the NICHD neonatal research network: Advancing neonatal care and outcomes, opportunities for the future

Howard W Kilbride et al. Semin Perinatol. 2022 Nov.

Abstract

At the inception of the Eunice Kennedy Shriver National Institute of Child Health and Development Neonatal Research Network (NRN), provision of care for extremely preterm (EPT) infants was considered experimental. The NRN Follow-up Study Group, initiated in 1993, developed infrastructure with certification processes and standards, allowing the NRN to assess 2-year outcomes for EPT and to provide important metrics for randomized clinical trials. This chapter will review the NRN Follow-up Study Group's contributions to understanding factors related to improved neurodevelopmental, behavioral, and social-emotional outcomes of EPT infants. We will also discuss follow up challenges, including reassessing which outcomes are most meaningful for parents and investigators. Finally, we will explore how outcome studies have informed clinical decisions and ethical considerations, given limitations of prediction of complex later childhood outcomes from early neurodevelopmental findings.

Trial registration: ClinicalTrials.gov NCT00063063.

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Conflict of interest statement

Disclosures The authors have no conflicts to disclose. While NICHD staff had input into the study design, conduct, analysis, and manuscript drafting, the comments and views of the authors do not necessarily represent the views of NICHD, the National Institutes of Health, the Department of Health and Human Services, or the U.S. Government.

Figures

Figure 1:
Figure 1:
NRN Follow Up Papers Published or in Press (2000–2021) by year. There are 216 follow up publications, which represents nearly 50% of all NRN publications (437 total) since 1990. (Data from RTI)
Figure 2
Figure 2
A, Neurodevelopment impairment (NDI) among 2458 children evaluated at 22–26 months’ corrected age. See original publication for definitions of NDI. B, Death and NDI at 22–26 months’ corrected age among children at 22–26 weeks’ gestational age who were actively treated at birth. Active treatment was defined as intubation, surfactant therapy, respiratory support, chest compressions, epinephrine, volume resuscitation, blood pressure support, or parenteral nutrition (From Bell EF, Hintz SR, Hansen NI, et al. Mortality, In-Hospital Morbidity, Care Practices, and 2-year Outcomes for Extremely Preterm Infants in the US, 2013–2018. JAMA. 2022; 327(3):248–263; with permission)
Figure 3:
Figure 3:
Comparison of 2- and 10-year NDI. In the Sankey plot, individual movement between NDI classification levels at 2 and 10 years is shown. See original article for two and ten-year definitions of NDI classifications. (From: Taylor GL, Joseph RM, Kuban KCK, et al. Changes in Neurodevelopmental Outcomes From Age 2 to 10 Years for Children Born Extremely Preterm. Pediatrics. 2021 May;147(5):e2020001040; with permission)
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