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

doi:10.1177/1535759721998329

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

Epilepsy Curr. 2021 Mar 5:1535759721998329. doi: 10.1177/1535759721998329. Online ahead of print.

Authors

Karnig Kazazian¹, Marissa Kellogg², Nora Wong³, Krista Eschbach⁴, Raquel Farias Moeller⁵, Nicolas Gaspard⁶, Lawrence J Hirsch⁷, Sara Hocker⁸, Teneille Gofton¹

Affiliations

¹ Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
² Oregon Health and Science University, Portland, OR, USA.
³ NORSE Institute, Summit, NJ, USA.
⁴ University of Colorado, Children's Hospital Colorado, Aurora, CO, USA.
⁵ Medical College of Wisconsin, Department of Neurology, Children's Wisconsin, Milwaukee, WI, USA.
⁶ Service de Neurologie, Université Libre de Bruxelles-Hôpital Erasme, Brussels, Belgium.
⁷ Comprehensive Epilepsy Center, Department of Neurology, Yale University, New Haven, CT, USA.
⁸ Division of Critical Care Neurology, Department of Neurology, Mayo Clinic, Rochester, MN, USA.

PMID: 33663265
DOI: 10.1177/1535759721998329

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.

Keywords: FIRES; NORSE; febrile; infection; new-onset refractory status epilepticus; registry.