The New-Onset Refractory Status Epilepticus (NORSE) Family Registry contributes to an international and systematic effort to collect a range of clinical and epidemiological information on individuals affected by NORSE and FIRES (Febrile Infection-related Epilepsy Syndrome) worldwide. 

NORSE is a clinical presentation affecting previously healthy children and adults. FIRES is a subcategory of NORSE and applies when a preceding fever occurred.  Information pertaining to disease course and survivorship remains limited and mortality and morbidity are variable but often high.

Survivors, surrogate/substitute decision makers and physicians can enter patient data into the REDCap-based registry via a link on the NORSE Institute website: https://www.norseinstitute.org/norse-registry-2. Information collected in this study includes past medical history, clinical presentation, disease course, survivorship, clinical sequelae and quality of life, among others. Participants are invited to complete follow-up surveys for up to two years following clinical presentation of seizures. Enrollment is ongoing in multiple languages and will remain open until 2025.

To date, 58 participants have enrolled in this study (2-78 years, median: 13.5, IQR: 21.5, 21 females and 37 males) from 12 different countries across 5 continents. 36/58 participants are survivors of NORSE/FIRES. At >6 months after the onset of NORSE/FIRES, survivors experience a mean of >12 seizures per month and remain on a median of 4 (IQR: 2) anti-seizure medications. The median quality of life amongst all survivors was rated as 4.0/10 (IQR: 3). 

Preliminary data suggests that survivors of NORSE/FIRES have a high seizure burden and poor quality of life. This international multi-lingual family registry will allow for collection of a broad range of variables to help develop hypotheses for future prospective studies. This registry provides an opportunity for families to contribute to the scientific understanding of this devastating disease.