Available online 10 June 2022, 151642

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.

Adverse Childhood Experiences

Attention deficit hyperactivity disorder

Autism spectrum disorder

Ages and Stages Questionnaire for Social-Emotional

Bronchopulmonary dysplasia

Child Behavioral Checklist

Child Protective Services

Extremely low birthweight

Extremely Preterm Birth Outcomes

Generic Database study

Gross Motor Function Classification System

Intraventricular hemorrhage

Mental Developmental Index

Neurodevelopmental impairment

Necrotizing enterocolitis

Eunice Kennedy Shriver National Institute of Child Health and Development

Neurologic impairment or developmental delay

Neonatal Research Network

Pervasive Development Disorder Screening Test

Randomized controlled trial

Surfactant Positive Airway Pressure and Pulse Oximetry Trial

Transfusion of Prematures trial

Very low birth weight

Vermont Oxford Network

© 2022 Published by Elsevier Inc.