How to Help Your Patients Enroll in the New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES) Family Registry, and Other Rare Epilepsy Registries

Karnig Kazazian, Marissa Kellogg, Nora Wong, Krista Eschbach, Raquel Farias Moeller, Nicolas Gaspard, Lawrence J. Hirsch, Sara Hocker, Teneille Gofton

Research output: Contribution to journalArticlepeer-review

Abstract

New-onset refractory status epilepticus (NORSE) is a rare clinical presentation of refractory status epilepticus (RSE) that occurs in people without active epilepsy or preexisting neurologic disorder. Febrile infection-related epilepsy syndrome (FIRES) is a subcategory of NORSE. New-onset refractory status epilepticus/FIRES are becoming increasingly recognized; however, information pertaining to disease course, clinical outcomes, and survivorship remains limited, and mortality and morbidity are variable, but often high. The objective of the NORSE/FIRES Family Registry is to (1) provide an easily accessible and internationally available multilingual registry into which survivors or NORSE/FIRES surrogates or family members of people affected by NORSE/FIRES or their physicians can enter data in a systematic and rigorous research study from anywhere in the world where internet is available; and (2) to examine past medical history, outcomes, and quality of life for people affected by NORSE/FIRES.

Original languageEnglish (US)
JournalEpilepsy Currents
DOIs
StateAccepted/In press - 2021

Keywords

  • FIRES
  • NORSE
  • febrile
  • infection
  • new-onset refractory status epilepticus
  • registry

ASJC Scopus subject areas

  • Clinical Neurology

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