International NORSE Consensus Recommendations Published
We’re proud to share a major milestone in the global effort to better understand and manage New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES).
An international panel of 48 medical experts has published the first consensus-based recommendations for the diagnosis, treatment, and research of NORSE/FIRES in both adults and children. The paper, titled “International consensus recommendations for management of New Onset Refractory Status Epilepticus (NORSE) including Febrile Infection-Related Epilepsy Syndrome (FIRES): Statements and Supporting Evidence”, was published in Epilepsia on 23 August 2022 and is the result of a major collaborative initiative led by Dr Ronny Wickström and a facilitator group of nine experts.
🔗 Read the full article on Epilepsia
A structured, evidence-informed process
The recommendations were developed using the Delphi methodology, a structured process designed to achieve consensus from a panel of experts. After reviewing current research, the group generated a series of statements relating to diagnosis, acute and post-acute treatment, and research priorities. Each statement was then scored by the expert panel on a scale from 1 (strongly disagree) to 9 (strongly agree). Statements with a median score of 7 or more reached consensus.
What’s in the recommendations?
In total, 85 statements achieved consensus and were divided into five key sections:
Disease characteristics
Diagnostic testing and sampling
Acute treatment
Post-acute phase treatment
Research, registries, and future directions
To support practical application, the article includes two clinical flowsheets: one for diagnosis and evaluation, and one for acute treatment. A companion paper presents a full evidence-based analysis of the recommendations and feedback from the panel.
Why it matters
NORSE and FIRES are devastating, often life-threatening conditions that remain poorly understood. These international consensus recommendations provide clinicians with much-needed guidance based on both the best available evidence and the collective experience of global experts. This work also marks a critical step forward in shaping future research, data collection, and collaborative approaches to care.
Help support our work on NORSE and FIRES
Too many families face this devastating illness with no answers, limited treatments, and little support. The NORSE Institute is a 501(c)(3) charitable organisation through the fiscal sponsorship of CURE Epilepsy.
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