Long term outcomes of patients with NORSE/FIRES and identification of clinical factors that can predict disease course and recovery.
Sam's Superheroes Foundation co-funded PhD Studentship
£110,000
Dr Marios Kaliakatsos
UCL Great Ormond Street Institute of Child Health
New-Onset Refractory Status Epilepticus (NORSE) is a rare, severe condition in which persistent seizures begin suddenly in people with no prior history of epilepsy and do not respond well to treatment. A major subtype, Febrile Infection-Related Epilepsy Syndrome (FIRES), occurs after a febrile illness. Survivors often face long-term complications including ongoing seizures, cognitive impairment, and difficulties with memory, mood, behaviour, and overall quality of life, but there is limited understanding of long-term outcomes and recovery patterns.
This PhD project will establish a UK, US, and European registry of approximately 90–120 NORSE survivors, including both children and adults. It will collect detailed longitudinal data on cognition, mental health, quality of life, treatment history, and clinical investigations such as brain imaging, blood tests, spinal fluid analysis, and EEG. Neuropsychological assessments will be completed in the UK cohort, with continued follow-up over time. Advanced statistical approaches and machine learning will be used to integrate these data and identify patterns of recovery and potential biomarkers that predict long-term outcomes.
This research aims to improve understanding of long-term outcomes following NORSE and FIRES and identify early biomarkers that predict recovery trajectories and risk of ongoing complications. In the medium term, these findings could help guide both acute and long-term clinical management by enabling earlier, more personalised treatment decisions. Ultimately, the study could improve prognosis, support, and quality of life for survivors by informing better-targeted care strategies.
