Available online 10 June 2022, 151642
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.
AbbreviationsACESAdverse Childhood Experiences
ADHDAttention deficit hyperactivity disorder
ASDAutism spectrum disorder
ASQ-SEAges and Stages Questionnaire for Social-Emotional
BPDBronchopulmonary dysplasia
CBCLChild Behavioral Checklist
CPSChild Protective Services
ELBWExtremely low birthweight
EPBOExtremely Preterm Birth Outcomes
GDBGeneric Database study
GMFCSGross Motor Function Classification System
IVHIntraventricular hemorrhage
MDIMental Developmental Index
NDINeurodevelopmental impairment
NECNecrotizing enterocolitis
NICHDEunice Kennedy Shriver National Institute of Child Health and Development
NIDDNeurologic impairment or developmental delay
NRNNeonatal Research Network
PDDST-2Pervasive Development Disorder Screening Test
RCTRandomized controlled trial
SUPPORTSurfactant Positive Airway Pressure and Pulse Oximetry Trial
TOPTransfusion of Prematures trial
VLBWVery low birth weight
VONVermont Oxford Network
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