We aimed to characterize the clinical profile and outcomes of new onset refractory status epilepticus (NORSE) in children, and investigated the relationship between fever onset and status epilepticus (SE).

This is a retrospective multi-center case series of pediatric patients with a diagnosis of FIRES treated acutely with anakinra who had neuropsychological testing at least 12 months after status epilepticus onset.

Long-term sequelae of the new onset refractory status epilepticus (NORSE) include the development of epilepsy, cognitive deficits, and behavioral disturbances.

We propose and prioritize important outcome domains that should be considered for future research investigating long‐term outcomes (LTO) after new onset refractory status epilepticus (NORSE).

This study analyzes data from the NORSE/FIRES Family Registry, an international web‐based registry available in six languages with data entered by patients, families, and clinicians to explore clinical presentations, survivorship, and long‐term outcomes in adult and pediatric FIRES patients.

We investigated whether complete blood count (CBC) analyses during intensive care unit stay could predict 12-month outcomes in patients with cryptogenic febrile infection-related epilepsy syndrome (FIRES), a subset of new-onset refractory status epilepticus (NORSE).

The objective of this scoping review is to report the spectrum of outcomes following admission to hospital for RSE from all etiologies and to determine whether there is evidence to suggest that survivors of new-onset RSE (NORSE) have different cognitive outcomes compared to survivors of RSE of identified etiology.

The objective of this study was to investigate inflammation using cerebrospinal fluid (CSF) and serum cytokines/chemokines in patients with new-onset refractory status epilepticus (NORSE) to better understand the pathophysiology of NORSE and its consequences.

The identification of relevant early biomarkers in cNORSE is important to elucidate pathophysiology, aid clinical decision-making, and prognosticate outcomes in cNORSE.

Here, we summarize the findings of studies reporting neuropathology findings in patients with NORSE, including FIRES. We identified 64 cryptogenic cases and 66 neuropathology tissue samples, including 37 biopsies, 18 autopsies, and seven epilepsy surgeries (the type of tissue sample was not detailed for 4 cases).

Emerging evidence suggests that immune dysregulation plays a pivotal role in triggering cryptogenic new-onset refractory status epilepticus (c-NORSE), prompting a consensus on early initiation of immunotherapy.

This article addresses whether physicians' close ties to their patients might play an unexamined role in their reluctance to initiate palliative care.

This article provides a practical clinical approach to managing NORSE (New-Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome), rare but devastating neurological emergencies. The authors synthesize current literature with expert consensus recommendations to create a time-based management algorithm.

The following is a guide to resources that can help patients and their families move forward across a range of situations.

Created by the Epilepsy Foundation, this guide offers information for those who have lost a loved one to Sudden Unexpected Death in Epilepsy (SUDEP) or other epilepsy-related causes.

Dr. Houman Khosravani interviews Dr. Lawrence Hirsch and Dr. Tobias Loddenkemper.

This downloadable checklist outlines suggested diagnostic investigations for suspected cases of New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES).

This peer-reviewed publication provides comprehensive, evidence-based recommendations for the identification and treatment of New Onset Refractory Status Epilepticus (NORSE) and its subtype, Febrile Infection-Related Epilepsy Syndrome (FIRES).

This foundational paper published in Epilepsia in 2018 presents the internationally agreed-upon consensus definitions for New-Onset Refractory Status Epilepticus (NORSE) and its subtype Febrile Infection-Related Epilepsy Syndrome (FIRES).

Watch the full recording of the NORSE Scientific Symposium held on June 3, 2025