US neonatal databases: Methods and uses

Abstract

Since the introduction of neonatal intensive care in the late 1960s, there has been a dramatic increase in the survival of very low birthweight (VLBW) infants. Creation of neonatal-perinatal medicine as a board-certified subspecialty in 1975 and the regionalization of neonatal intensive care in the late 1970s were accompanied by rapid changes in the clinical management of very low birthweight neonates. The subsequent introduction of computer technology facilitated the development of individual hospital data systems designed to monitor patient care, costs and outcomes. More comprehensive neonatal databases were created in the late 1980s, in response to the need for detailed clinical data to monitor the practice, effectiveness and cost of intensive care. The purpose of this report is to describe four large US neonatal databases maintained by the National Institute of Child Health and Human Development (NIHCD) Neonatal Research Network, the Vermont-Oxford Network, the National Perinatal Information Center and the Northern California Kaiser Medical Group, as examples of different types of neonatal databases. The NICHD Neonatal Research Network and its registry will be described in detail. The parent organizations of the other three databases will be described briefly and the purposes, membership and types of data collected will be compared. Finally, we will give examples of the uses made of these large databases and suggest potential projects which may further enhance their usefulness. Since the introduction of neonatal intensive care in the late 1960s, there has been a dramatic increase in the survival of very low birthweight (VLBW) infants. Creation of neonatal-perinatal medicine as a board-certified subspecialty in 1975 and the regionalization of neonatal intensive care in the late 1970s were accompanied by rapid changes in the clinical management of very low birthweight neonates. The subsequent introduction of computer technology facilitated the development of individual hospital data systems designed to monitor patient care, costs and outcomes. More comprehensive neonatal databases were created in the late 1980s, in response to the need for detailed clinical data to monitor the practice, effectiveness and cost of intensive care. The purpose of this report is to describe four large US neonatal databases maintained by the National Institute of Child Health and Human Development (NIHCD) Neonatal Research Network, the Vermont-Oxford Network, the National Perinatal Information Center and the Northern California Kaiser Medical Group, as examples of different types of neonatal databases. The NICHD Neonatal Research Network and its registry will be described in detail. The parent organizations of the other three databases will be described briefly and the purposes, membership and types of data collected will be compared. Finally, we will give examples of the uses made of these large databases and suggest potential projects which may further enhance their usefulness.