P.012 The new-onset refractory status epilepticus (NORSE/FIRES) family registry

Background: New-onset refractory status epilepticus (NORSE) is a rare clinical presentation affecting previously healthy individuals. Febrile infection-related epilepsy syndrome (FIRES) subcategory of NORSE and applies when preceding fever occurs. The NORSE/FIRES Family Registry has been developed to gain insight into risk factors assess the spectrum outcomes amongst survivors. Methods: Survivors, surrogates, physicians can enter patient data REDCap-based registry: https://www.norseinstitute.org/norse-registry-2. Information collected includes medical history, presentation, quality life, among others. Participants are invited complete follow-up surveys for up two years following seizures. Enrollment ongoing in multiple languages. Results: 56 participants enrolled from 12 countries (2-78 years, median: 12.5, IQR: 20.5, 31 survivors). At ≥6 months after onset, survivors experience mean ≥12 seizures per month remain on median 4 (IQR: 3) anti-seizure medications. life all was rated 4/10 3.5). Conclusions: Preliminary suggests that have high seizure burden poor life. This international multi-lingual family registry will help develop hypotheses future studies provides an opportunity families contribute scientific understanding this disease.