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◆ Epilepsia2026-06-08· Family medicine

<scp>New‐onset refractory status epilepticus</scp> /febrile infection‐related epilepsy syndrome centers of excellence: A framework for coordinated care, research, and improved outcomes

Krista Eschbach, Kristen Fisher, Hiba A. Haider, Desirae Casas, Nicolas Gaspard, Emily J. Gilmore, Teneille Gofton, Margaret T. Gopaul, Lawrence J. Hirsch, Eyal Muscal, James J. Riviello, Zubeda B. Sheikh, Coral M. Stredny, Olga Taraschenko, Ronny Wickström, Nora Wong, Yi-Chen Lai

原始摘要(英文原文)· Original abstract
K.E. has received research funding support from the Pediatric Epilepsy Research Consortium, National Institutes of Health (NIH), and Patient-Centered Outcome Research Institute (PCORI). H.A.H. has received research support from the National Institute of Neurological Disorders and Stroke (NINDS), the National Center for Advancing Translational Sciences, and PCORI; royalties from Wolters Kluwer for authoring chapters for UpToDate Neurology and from Springer Publishing for being coeditor of the book Handbook of ICU EEG, 2nd edition; and honoraria for speaking by Stratus. D.C. is the parent of an individual with FIRES. She serves in an unpaid volunteer role with the NORSE Institute as Editor-in-Chief of the institute's Family Newsletter. In addition, she is a caregiver/family partner for the PCORI award “Comparing the Effects of Anakinra and Tocilizumab on Outcomes in Patients with New-Onset Refractory Status Epilepticus.” No payments have yet been received for participation in the PCORI project. N.G. has received (1) research support to his institution from the Fonds de la Recherche Scientifique, the Fonds Erasme pour la Recherche Médicale, the Fondation Wiener-Anspach, the Fonds Jaumotte-Demoulin, the Belgian Health Care Knowledge Center, and Innoviris; (2) royalties from MedLink for coauthoring chapters for MedLink Neurology; (3) consultation fees for advising from Neuraxpharm, UCB, and Bioserenity; and (4) honoraria for speaking from Angelini. N.G. serves on the Data Safety and Management Board for the PCORI award “Comparing the Effects of Anakinra and Tocilizumab on Outcomes in Patients with New-Onset Refractory Status Epilepticus.” E.J.G. receives NIH funding for unrelated research. T.G. receives funding from the Canadian Institute of Health Research and the Academic Medical Organization of Southwestern Ontario for unrelated research. L.J.H. has received (1) research support to Yale University for investigator-initiated studies from The Yale NORSE/FIRES Biorepository Fund, the NIH, and PCORI; (2) consultation fees for advising from Ceribell, Natus, and UCB; (3) royalties from Wolters Kluwer for authoring a chapter for UpToDate Neurology, from Wiley for coauthoring the book Atlas of EEG in Critical Care, 1st and 2nd editions, and from Springer for being Associate Editor for Herlopian A (ed). Epilepsy Surgery: A Practice Case-based Approach (2024); and (4) honoraria for speaking/training from NeuroPace and Natus. E.M. has received honoraria for advisory boards for SOBI (rheumatic disease indications and trials; not NORSE). C.M.S. receives grant support from the Pediatric Epilepsy Research Foundation, PCORI, Eunice Kennedy Shriver National Institute of Child Health and Human Development, and National Center for Advancing Translational Services. C.M.S. is an unpaid member of the medical and scientific advisory board of the Autoimmune Encephalitis Alliance. She has participated in a clinical trial (unpaid) supported by Roche. O.T. is the site primary investigator for the PCORI award “Comparing the Effects of Anakinra and Tocilizumab on Outcomes in Patients with New-Onset Refractory Status Epilepticus.” N.W. is the Executive Director of the NORSE Institute, a nonprofit organization. N.G. and L.J.H. are the unpaid cochairs of the NORSE Institute Medical and Scientific Advisory Board. K.E., H.A.H., E.J.G., T.G., M.T.G., Y.-C.L., E.M., J.J.R., Z.B.S., C.M.S., O.T., and R.W. are unpaid members of the NORSE Institute Medical and Scientific Advisory Board. K.S.F. has no conflicts of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. The views expressed in this article are solely those of the authors and do not necessarily reflect the official position of Epilepsia or the International League Against Epilepsy. Data sharing is not applicable to this article, as no new data were created or analyzed in this study.
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<scp>New‐onset refractory status epilepticus</scp> /febrile infection‐related epilepsy syndrome centers of excellence: A framework for coordinated care, research, and improved outcomes — 科研速览 Science Skim