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 |