Multicentre observational status-epilepticus registry: protocol for ICTAL

Multicentre observational status-epilepticus registry: protocol for ICTAL. Jacq G, Chelly G, Quenot JP, Soulier P, Lesieur O, Beuret P, Holleville M, Bruel C, Bailly P, Sauneuf B, Sejourne C, Rigaud JP, Galbois A, Arrayago M, Plantefeve G, Stoclin A, Schnell D, Fontaine C, Perier F, Bougouin W, Pichon N, Mongardon M, Ledoux D, Lascarrou JB, Legriel S. BMJ Open 2022


Introduction Status epilepticus (SE) is a common life-threatening neurological emergency that can cause long-term impairments. Overall outcomes remain poor. Major efforts are required to clarify the epidemiology of SE and the determinants of outcomes, thereby identifying targets for improved management.

Methods and analysis ICTAL Registry is a multicentre open cohort of critically ill patients with convulsive, non-convulsive or psychogenic non-epileptic SE. Observational methods are applied to collect uniform data. The goal of the ICTAL Registry is to collect high-quality information on a large number of patients, thereby allowing elucidation of the pathophysiological mechanisms involved in mortality and morbidity. The registry structure is modular, with a large core data set and the opportunity for research teams to create satellite data sets for observational or interventional studies (eg, cohort multiple randomised controlled trials, cross-sectional studies and short-term and long-term longitudinal outcome studies). The availability of core data will hasten patient recruitment to studies, while also decreasing costs. Importantly, the vast amount of data from a large number of patients will allow valid subgroup analyses, which are expected to identify patient populations requiring specific treatment strategies. The results of the studies will have a broad spectrum of application, particularly given the multidisciplinary approach used by the IctalGroup research network.

Ethics and dissemination The ICTAL Registry protocol was approved by the ethics committee of the French Intensive Care Society (#CE_SRLF 19-68 and 19-68a). Patients or their relatives/proxies received written information to the use of the retrospectively collected and pseudonymised data, in compliance with French law. Prospectively included patients receive written consent form as soon as they recover decision-making competency; if they refuse consent, they are excluded from the registry. Data from the registry will be disseminated via conference presentations and peer-reviewed publications.

Trial registration number NCT03457831.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:

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L’association IctalGroup est une association loi 1901 à but non lucratif de professionnels soignants, médecins et paramédicaux, qui se consacre à l’enseignement et à la recherche dans le domaine des soins critiques chez les patients avec une atteinte neurologique. Nous avons un intérêt particulier pour l’état de mal épileptique et ses complications à long terme.


Particulier : Vous pouvez bénéficier d’une réduction d’impôt égale à 66% du montant de votre don, dans la limite de 20% de votre revenu imposable.

Entreprise : l’ensemble des versements à IctalGroup permet de bénéficier d’une réduction d’impôt sur les sociétés de 60% du montant de ces versements, plafonnée à 20000€ ou 5 ‰ (5 pour mille) du chiffre d’affaires annuel hors taxe de l’entreprise. En cas de dépassement de plafond, l’excédent est reportable sur les 5 exercices suivants.

Crowdfunding IctalGroup


We are a medical and nurse nonprofit association of health care professionals dedicated to teaching and research in the neurocritical care field. We have a particular interest in status epilepticus and its long term complications.

IctalGroup is seeking funding to recruit staff in order to facilitate data collection and purchase equipment to facilitate medical and nursing research.

Your donations, no matter how big or small, will help sustain our organization and perform further research in the neurocritical care setting.

The following link jump you into the donation page : donation page

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Spectrum of neurological manifestations associated with SARS-CoV-2 infection

All neurological manifestations

Acute Encephalopathy :

Anti-NMDA receptor encephalitis

Anti-NMDA receptor encephalitis in a psychiatric Covid-19 patient: A case report. Brain, Behavior, and Immunity 2020

Seizures / Status Epilepticus / Myoclonus / EEG findings

Acute Hemorrhagic Necrotizing Encephalopathy :

Ischemic Stroke / Intra Cerebral Hemorrhage / Cerebral Venous Sinus Thrombosis :


Demyelinating lesions



Guillain-Barré Syndrome / Miller Fisher Syndrome

Posterior Reversible Encephalopathy Syndrome

Subjective neurological symptoms

Postmortem positive or negative findings

Imaging findings

Biomarkers of CNS injury

Management complications

Critical Care EEG Course

Knowledge of the basic fundamental skills of electroencephalography would enable medical and nursing staffs to provide efficient and effective bedside EEG monitoring in critically ill patients.

The aim of this study is to evaluate the ability of a 10-points EEG teaching program to allow bedside caregivers (medical and nursing intensive care unit staff) interpreting EEG in the critical care setting (#NCT03545776).

Participants are volunteers among medical and nursing ICU staff of the participating ICUs, excluding experienced or trained ICU staff members to EEG interpretation (pre-test score > 5/10).

Educational program : Medical and nursing staff will be given a 10-points EEG face-to-face initial training course that will be preceded by a pre-test evaluation and followed by delayed post-test evaluations. Training will be followed by an online teaching consisting on additional questions and answers quizzes based on the 10 following educational goals.

10-points EEG educational objectives : physiological rhythms, reactivity, symmetry, effects of sedation, burst suppression, paroxysmal activities, periodic / pseudoperiodic activities, rhythmic activities, artifacts, null EEG

In order to avoid any risk of intrasite contamination, all the learners benefiting from the training in the same department will be trained in a uniform time, with respect to the training schedule regarding post-test evaluations (day-1, day-15 and day-30). A final evaluation will be performed at day-90 after beginning of the training course.

First outcome is overall EEG interpretation at Day 90 as defined by percentage of learners with a correct answer rate. Training will be considered as efficient if more than 75% of learners are associated with a correct answer rate above 80% to EEG interpretation test at day 90 after initial training.

Secondary outcomes are before/after comparison of correct answer rate between pre-test and post-tests evaluations at day 1, day 15, day 30 and day 90 after face-to-face training. Analyzes will be carried out according to each of the 10-points educational goals, according to the medical or nursing staff category, according to the student’s degree and according to the center and to usual way of using EEG (continuous, sequential, external provider)

Related publication : Teaching Important Basic EEG Patterns of Bedside Electroencephalography to Critical Care Staffs: A Prospective Multicenter Study. Legriel S, Jacq G, Lalloz A, Geri G, Mahaux P, Bruel C, Brochon S, Zuber B, André C, Dervin K, Holleville M, Cariou A. Neurocrit Care 2020.