Abstract
Awareness of the long-term outcomes of status epilepticus is key to understanding the condition overall. Maintaining ties with patients' families is vital to both obtaining better long-term patient outcomes and obtaining that elusive data on long-term conditions. Common language and linked infrastructure support these ties. This position is posed within the context of NORSE (new-onset refractory status epilepticus) and FIRES (febrile infection-related epilepsy syndrome). This paper was presented at the 8th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures held in September 2022.
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