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Neurology. 2019 Apr 23;92(17):802-810. doi: 10.1212/WNL.0000000000007322. Epub 2019 Mar 20.

New onset refractory status epilepticus research: What is on the horizon?

Author information

1
From the Schulich School of Medicine and Dentistry (T.E.G.), Western University, London, Canada; Service de Neurologie (N.G.), Université Libre de Bruxelles-Hôpital Erasme, Brussels, Belgium; Division of Critical Care Neurology, Department of Neurology (S.E.H.), Mayo Clinic, Rochester, MN; Division of Epilepsy and Clinical Neurophysiology, Department of Neurology (T.L.), Boston Children's Hospital & Harvard Medical School, MA; and Comprehensive Epilepsy Center, Department of Neurology (L.G.H.), Yale University, New Haven, CT. teneille.gofton@lhsc.on.ca.
2
From the Schulich School of Medicine and Dentistry (T.E.G.), Western University, London, Canada; Service de Neurologie (N.G.), Université Libre de Bruxelles-Hôpital Erasme, Brussels, Belgium; Division of Critical Care Neurology, Department of Neurology (S.E.H.), Mayo Clinic, Rochester, MN; Division of Epilepsy and Clinical Neurophysiology, Department of Neurology (T.L.), Boston Children's Hospital & Harvard Medical School, MA; and Comprehensive Epilepsy Center, Department of Neurology (L.G.H.), Yale University, New Haven, CT.

Abstract

New-onset refractory status epilepticus (NORSE) is a clinical presentation, not a specific diagnosis, in a patient without active epilepsy or other preexisting relevant neurologic disorder, with new onset of refractory status epilepticus (RSE) that does not resolve after 2 or more rescue medications, without a clear acute or active structural, toxic, or metabolic cause. Febrile infection-related epilepsy syndrome is a subset of NORSE in which fever began at least 24 hours prior to the RSE. Both terms apply to all age groups. Until recently, NORSE was a poorly recognized entity without a consistent definition or approach to care. We review the current state of knowledge in NORSE and propose a roadmap for future collaborative research. Research investigating NORSE should prioritize the following 4 domains: (1) clinical features, etiology, and pathophysiology; (2) treatment; (3) adult and pediatric evaluation and management approaches; and (4) public advocacy, professional education, and family support. We consider international collaboration and multicenter research crucial in achieving these goals.

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