About our Research

NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome) remain some of the most challenging and least understood neurological disorders.

Consensus definitions were only published in 2018, so our research priorities are broad and collaborative, reflecting the complexity and rarity of these syndromes.

Our Research Priorities

  • 1. Etiology

    We focus on identifying biomarkers and risk factors that might explain the underlying causes of cryptogenic NORSE/FIRES.

    This includes investigating genetic, immunologic, inflammatory, microbiome-related, infectious, or other potential contributors.

    Our approach spans both animal models and human studies to better understand pathophysiology.

  • 2. Natural History

    Through deep phenotyping of NORSE/FIRES patients, we collect detailed clinical and paraclinical data, such as imaging, EEG, cytokine profiles, and treatment responses to explore how these factors influence outcomes and therapeutic effectiveness.

  • 3. Long-Term Outcomes

    We seek to define the long-term impacts on epilepsy, cognition, behaviour, and quality of life, while identifying predictors of these outcomes.

    This research also explores optimal management strategies for patients in the post-acute phase.

  • 4. Research Infrastructure

    Building a robust infrastructure to support future research and improve treatment delivery is vital.

    Our Call to Action outlines how collaboration and shared resources can accelerate progress.

Ongoing Research

Prospective Observational Study

Members of the Critical Care EEG Monitoring Research Consortium (CCEMRC) are conducting a prospective study enrolling both adult and paediatric NORSE patients. Clinical data and biological samples are collected.

NORSE Family Registry

Led by Dr Teneille Gofton (Western University, London, Ontario), this international registry collects information from families, patients, and physicians through the REDCap online platform.

Collaborative Biobank

We operate the NORSE/FIRES open, collaborative biobank at Yale, which houses over 120 cases. We handle all consents, manage shipping logistics, and facilitate access to samples and clinical data for approved research projects.

Contribute Your Expertise

We invite clinicians, researchers, and medical professionals to contribute to the growing knowledge base on NORSE and FIRES. If you have published articles, recorded podcasts, or developed insights or resources that could benefit others, please get in touch.

If you have been directly involved in the clinical care of a NORSE patient and wish to be listed in the NORSE Medical Directory, please get in touch with us by completing the form.