A registry of NORSE patients is currently being conducted by member centers of the Critical Care EEG Monitoring Research Consortium. Demographic, medical, and biological data (blood, serum CSF, brain tissue, if available) are being collected. The study has the potential to help define the cause of NORSE, determine which medications warrant further investigations, and help identify key determinants of complications and outcomes in patients with refractory status epilepticus.   

The overall goals of this prospective observational clinical trial of patients with cryptogenic NORSE is to define its cause, identify the key determinants of outcome, and determine best management strategies.
Inclusion criteria is SE refractory to first- and second-line therapy and no etiology found within the first twenty-four hours despite extensive work-up in patients of age 6 and older. Exclusion criteria is major ongoing acute or subacute medical issues (e.g. organ failure, active cancer, etc.) in the opinion of the investigator.