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Table 1 Baseline, SE-related and outcome variables; SE: Status Epilepticus; mRS: modified Rankin Scale; ILAE: International League Against Epilepsy; NCSE: non convulsive status epilepticus; EMSE score: Epidemiology Based Mortality Score in Status Epilepticus

From: Sustained effort network for treatment of status epilepticus/European academy of neurology registry on adult refractory status epilepticus (SENSE-II/AROUSE)

Demographics and premorbid status

Age at admission, gender, ethnicity

Estimated weight on admission.

Location at SE onset

Date and time of hospital admission

Premorbid Clinical Frailty Scale [60] and premorbid mRS [61]

Health variables

History of previous seizures/epilepsy, history of SE

Relevant known health problems (comorbidities) as found in Charlson comorbidities index [62]

SE-related variables

General

Date and time of SE onset

Refractory and super-refractory SE

Date and time of refractoriness and super refractoriness

Semiology

Semiology according the ILAE [1]

Worst seizure type according to STESS score [63]

Level of consciousness at SE diagnosis or onset

Etiology

Etiology according to the ILAE and according to the EMSE score

SE episode fulfilling criteria of New Onset Refractory Status Epilepticus (NORSE) or Febrile Infection-Related Epilepsy Syndrome (FIRES) [7]

EEG-related variables

Date of ictal EEG (if applicable)

EEG pattern (according to the ACNS 2021 terminology and Salzburg criteria for NCSE) [2, 58, 59]

EEG findings as classified in EMSE score [50]

If NCSE was diagnosed by EEG and clinical response to IV ASM, then the ASMs and the timing and kind of EEG and clinical improvement are documented.

Use of cEEG or repeated EEG in management/diagnosis

Used EEG-target for CIVAD : seizure suppression, burst-suppression or flat EEG

Performed diagnosis procedures

Brain CT or MRI, continuous video-EEG monitoring (cEEG), fluorine-18 fluorodeoxyglucose (FG) brain positron emission tomography (PET) scan, cerebrospinal fluid analysis, antineuronal antibodies research, brain biopsy, therapeutic drug monitoring, Multimodal Invasive Monitoring or other.

Outcome-related variables

Date and time of SE cessation and EEG-documentation of SE cessation

Date and time of first-time following commands

Date of discharge from hospital

mRS at discharge and at 30 days after admission (if still hospitalized)

At 90 days after discharge: mRS, recurrence of seizure, ongoing ASM therapy

Date and cause of death

Reason for withdrawal of life support therapies