NORSE Prospective Study

A study of NORSE patients is currently being conducted by participating members of the Critical Care EEG Monitoring Research Consortium. This study enrolls both adults and pediatric patients and includes both NORSE and FIRES. Demographic, medical, and biological data (blood, serum CSF, brain tissue, if available) are being collected. 

The goals of this prospective observational clinical trial of patients with NORSE is to identify its cause(s) and key determinants of outcome, and determine best management strategies. Inclusion criteria is SE refractory to first- and second-line therapy (does not have to be super-refractory, just refractory: failing a benzo & 1 other med qualifies) 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.

See NORSE Consortium study newsletter with eligibility details for patient enrollment and contact information for study participation here.