A workshop on the follow-up care of high-risk infants sponsored by the National Institute of Child Health and Human Development, National Institute of Neurologic Disorders and Stroke, and the Centers for Disease Control and Prevention was held June 19-20, 2002. There are currently no standardized guidelines for provision of follow-up services for high-risk infants in tertiary care centers despite the requirement for follow-up clinic experience in the 97 approved neonatal fellowship training programs in the United States and the increasing number of centers participating in multicenter networks. As the total number of survivors at risk for neurodevelopmental morbidities increases, many clinical research questions have surfaced that can only be answered by long-term follow-up studies. There is increasing awareness of the importance of long-term outcome in randomized, controlled trials, because perinatal interventions may dramatically alter later growth and development. There is also an increased recognition of the potential disconnect between perinatal outcomes and long-term outcomes. The administration of oxygen and postnatal steroids are prime examples of interventions that may have immediate positive effects but negative long-term effects. In addition, multicenter studies have identified significant center differences in the management and developmental outcome of high-risk infants. These findings led to the recognition of the need to improve standardization and comparability of methodology and data collection within and among centers and networks as a first step toward research to improve the long-term neurodevelopmental outcome of high-risk infants. The workshop participants met to define optimal methods to assess the outcome of high-risk infants, identify gaps in knowledge about the neurodevelopmental outcome of high-risk infants, and prioritize research efforts in response to these gaps.

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