How to Help Your Patients Enroll in the New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES) Family Registry, and Other Rare Epilepsy Registries.
Kazazian K, Kellogg M, Wong N, Eschbach K, Moeller RF, Gaspard N, Hirsch LJ, Hocker S, Gofton T. How to Help Your Patients Enroll in the New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES) Family Registry, and Other Rare Epilepsy Registries. Epilepsy Currents 2021, 1535759721998329. PMID: 33663265, DOI: 10.1177/1535759721998329.Peer-Reviewed Original ResearchFebrile infection-related epilepsy syndromeNew-onset refractory status epilepticusRefractory status epilepticusStatus epilepticusFamily RegistryRare clinical presentationPast medical historyQuality of lifeEpilepsy registryFebrile infectionsActive epilepsyDisease courseClinical outcomesClinical presentationEpilepsy syndromesMedical historyNeurologic disordersRigorous research studiesEpilepticusRegistryPatient enrollsFamily membersOutcomesMorbidityEpilepsy