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Neonatal Encephalopathy Registry

Data collection for the Vermont Oxford Network Neonatal Encephalopathy Registry (NER) will end after the completion of the 2012 Birth Year. The Registry has produced exciting research opportunities. Unfortunately, the time and funding constraints around data collection and infant follow-up have led us to the decision to suspend data collection efforts.

The extensive data collected has resulted in important research and publication opportunities. From 2006-2010, 95 centers registered 4,232 infants. Of those, 59% suffered a seizure, 50% had a 5 minute Apgar score of ≤ 3, 38% received hypothermic therapy, and 18% had stupor/coma documented on neurologic exam. Sixty-four percent received ventilator support, 65% received anticonvulsants, 66% had an MRI, 23% had a CT, 67% had a full channel EEG and 33% had an amplitude integrated EEG. Of all infants, 87% survived.

Information about publications, as well as future research using Registry Data, is available on the Publications page.

Background

The Vermont Oxford Network established the Neonatal Encephalopathy Registry (NER) for newborn infants with encephalopathy and those treated with hypothermia.

The NER identifies demographic characteristics, associated perinatal factors, medical treatments, co-morbidities and outcomes of the enrolled infants.

It also serves the purpose of allowing us to evaluate variations in practice, monitor the introduction and dissemination of new neuroprotective therapies such as hypothermia, and assess selection criteria for neuroprotective therapy

Moreover, the NER allows us to identify opportunities for improvement in the quality and safety of care for infants with encephalopathy,define important questions for clinical research, and plan prospective research and randomized trials.


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