A registry of NORSE patients is currently being conducted by member centers of the Critical Care EEG Monitoring Research Consortium which is comprised of 54 medical centers in the US, Canada and Brussels. Demographic, medical, and biological data (blood, serum CSF, brain biopsy if available) will be 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 three days despite extensive work-up in patients of age 5 and older.