Gwenaelle Jacq, Jonathan Chelly, Jean-Pierre Quenot, Pauline Soulier, Olivier Lesieur, Pascal Beuret, Mathilde Holleville, Cedric Bruel, Pierre Bailly, Bertrand Sauneuf, Caroline Sejourne, Jean Philippe Rigaud, Arnaud Galbois, Marine Arrayago, Gaetan Plantefeve, Annabelle Stoclin, David Schnell, Candice Fontaine, François Perier, Wulfran Bougouin, Nicolas Pichon, Nicolas Mongardon, Didier Ledoux, Jean-Baptiste Lascarrou, Stephane Legriel, Centre Hospitalier de Versailles André Mignot (CHV), Centre Hospitalier Intercommunal Toulon-La Seyne sur Mer - Hôpital Sainte-Musse, CHU Dijon, Centre Hospitalier Universitaire de Dijon - Hôpital François Mitterrand (CHU Dijon), Groupe Hospitalier Sud, Groupe hospitalier de La Rochelle, Centre Hospitalier de Roanne, Hôpitaux Universitaires Paris Nord Val de Seine (HUPNVS), Hôpital Beaujon [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Centre hospitalier Saint-Joseph [Paris], Centre Hospitalier Régional Universitaire de Brest (CHRU Brest), Service de Réanimation Polyvalente [CHPC - Site Louis Pasteur], Site Louis Pasteur [CHPC], CH Centre Hospitalier Public du Cotentin (CHPC)-CH Centre Hospitalier Public du Cotentin (CHPC), Centre Hospitalier de Béthune (CH Béthune), GHT de l'Artois, Centre hospitalier de Dieppe, Centre Hospitalier Privé Claude Galien - Ramsay Santé, Centre Hospitalier de Cannes, Centre hospitalier Argenteuil (CH Argenteuil), Institut Gustave Roussy (IGR), Département de soins aigus [Gustave Roussy] (DSA), Centre Hospitalier d'Angoulême (CH Angoulême), Hôpital Privé Jacques Cartier [Massy], Hôpital de Brive, Hôpital Henri Mondor, Centre Hospitalier Universitaire de Liège (CHU-Liège), Centre hospitalier universitaire de Nantes (CHU Nantes), Centre de recherche en épidémiologie et santé des populations (CESP), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay, Acknowledgements We thank A Wolfe MD (Chaumont, France) for helping to prepare the manuscript. The study was supported by the French public funding agency Délégation à la Recherche Clinique et à l’Innovation (DRCI), Versailles, France., and HAL UVSQ, Équipe
IntroductionStatus 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 analysisICTAL 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 disseminationThe 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 numberNCT03457831.