We aimed to characterize the clinical profile and outcomes of new onset refractory status epilepticus (NORSE) in children, and investigated the relationship between fever onset and status epilepticus (SE).

This is a retrospective multi-center case series of pediatric patients with a diagnosis of FIRES treated acutely with anakinra who had neuropsychological testing at least 12 months after status epilepticus onset.

Long-term sequelae of the new onset refractory status epilepticus (NORSE) include the development of epilepsy, cognitive deficits, and behavioral disturbances.

We propose and prioritize important outcome domains that should be considered for future research investigating long‐term outcomes (LTO) after new onset refractory status epilepticus (NORSE).

This study analyzes data from the NORSE/FIRES Family Registry, an international web‐based registry available in six languages with data entered by patients, families, and clinicians to explore clinical presentations, survivorship, and long‐term outcomes in adult and pediatric FIRES patients.

We investigated whether complete blood count (CBC) analyses during intensive care unit stay could predict 12-month outcomes in patients with cryptogenic febrile infection-related epilepsy syndrome (FIRES), a subset of new-onset refractory status epilepticus (NORSE).

The objective of this scoping review is to report the spectrum of outcomes following admission to hospital for RSE from all etiologies and to determine whether there is evidence to suggest that survivors of new-onset RSE (NORSE) have different cognitive outcomes compared to survivors of RSE of identified etiology.