2024
Communication trends over time in new-onset refractory status epilepticus (NORSE): Interim analysis from the NORSE/FIRES Family Registry
Kazazian K, Gaspard N, Hirsch L, Kellogg M, Hocker S, Wong N, Farias-Moeller R, Eschbach K, Gofton T. Communication trends over time in new-onset refractory status epilepticus (NORSE): Interim analysis from the NORSE/FIRES Family Registry. Epilepsy & Behavior 2024, 160: 110023. PMID: 39241640, DOI: 10.1016/j.yebeh.2024.110023.Peer-Reviewed Original ResearchPalliative care servicesFamily RegistryCare servicesImprove overall carePrognostic conversationsAcute hospitalsOverall careEpidemiological informationConsensus definitionPhysician-patient-family relationshipRegistryNORSE/FIRESMinority of patientsPrognostic informationSatisfactionFamilySystematic effortRecovery processServicesCarePatientsHospitalPrevalenceQualityEpilepsy syndromes
2021
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, 21: 382-384. PMID: 33769129, PMCID: PMC8655258, DOI: 10.1177/15357597211002869.Peer-Reviewed Original ResearchHow 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