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The treatment of refractory and super refractory status epilepticus is a "terra incognita" from the point of view of evidence-based medicine. As randomized or controlled studies that are sufficiently powered are not feasible in relation to the many therapies and treatment approaches available, we carried out an online multinational audit (registry) in which neurologists or intensivists caring for patients with status epilepticus may prospectively enter patients who required general anesthesia to control the status epilepticus (SE). To date, 488 cases from 44 different countries have been collected. Most of the patients had no history of epilepsy and had a cryptogenic etiology. First-line treatment was delayed and not in line with current guidelines. The most widely used anesthetic of first choice was midazolam (59%), followed by propofol and barbiturates. Ketamine was used in most severe cases. Other therapies were administered in 35% of the cases, mainly steroids and immunotherapy. Seizure control was achieved in 74% of the patients. Twenty-two percent of patients died during treatment, and four percent had treatment actively withdrawn because of an anticipated poor outcome. The neurological outcome was good in 36% and poor in 39.3% of cases, while 25% died during hospitalization. Factors that positively influenced outcome were younger age, history of epilepsy, and low number of different anesthetics tried. This article is part of a Special Issue entitled "Status Epilepticus".

Original publication




Journal article


Epilepsy Behav

Publication Date





318 - 324


Global audit, Refractory, Registry, Status epilepticus, Super refractory, Treatment, Adolescent, Adult, Age Factors, Aged, Aged, 80 and over, Anesthesia, General, Anesthetics, Dissociative, Anesthetics, Intravenous, Anticonvulsants, Barbiturates, Child, Child, Preschool, Drug Resistant Epilepsy, Female, Guidelines as Topic, Health Care Surveys, Humans, Infant, Infant, Newborn, Ketamine, Male, Medical Audit, Midazolam, Middle Aged, Nervous System Diseases, Propofol, Prospective Studies, Registries, Status Epilepticus, Treatment Outcome, Young Adult