Sustained effort network for treatment of status epilepticus/European academy of neurology registry on adult refractory status epilepticus (SENSE-II/AROUSE)
Charlotte Damien,
Markus Leitinger,
Christoph Kellinghaus,
Adam Strzelczyk,
Pia De Stefano,
Christoph P. Beier,
Raoul Sutter,
Leena Kämppi,
Daniel Strbian,
Erik Taubøll,
Felix Rosenow,
Raimund Helbok,
Stephan Rüegg,
Maxwell Damian,
Eugen Trinka,
Nicolas Gaspard
Affiliations
Charlotte Damien
Department of Neurology, Hôpital Universitaire de Bruxelles, Hôpital Erasme
Markus Leitinger
Department of Neurology Neurointensive Care and Neurorehabilitation, Centre for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, European Reference Network EpiCARE
Christoph Kellinghaus
Epilepsy Center Münster-Osnabrück, Klinikum Osnabrück
Adam Strzelczyk
Department of Neurology and Epilepsy Center Frankfurt Rhine-Main, Goethe-University and University Hospital Frankfurt
Pia De Stefano
EEG & Epilepsy Unit, Department of Clinical Neurosciences, University Hospital of Geneva
Christoph P. Beier
Department of Neurology, Odense University Hospital
Raoul Sutter
Department of Neurology, University Hospital Basel
Leena Kämppi
Department of Neurology, Epilepsia Helsinki, Helsinki University Hospital and University of Helsinki
Daniel Strbian
Department of Neurology, Epilepsia Helsinki, Helsinki University Hospital and University of Helsinki
Erik Taubøll
Department of Neurology, Oslo University Hospital
Felix Rosenow
Department of Neurology and Epilepsy Center Frankfurt Rhine-Main, Goethe-University and University Hospital Frankfurt
Raimund Helbok
Department of Neurology, Johannes Kepler University Linz
Stephan Rüegg
Department of Neurology, Epilepsia Helsinki, Helsinki University Hospital and University of Helsinki
Maxwell Damian
Department of Critical Care, Essex Cardiothoracic Centre
Eugen Trinka
Department of Neurology Neurointensive Care and Neurorehabilitation, Centre for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, European Reference Network EpiCARE
Nicolas Gaspard
Department of Neurology, Hôpital Universitaire de Bruxelles, Hôpital Erasme
Abstract Background Status Epilepticus (SE) is a common neurological emergency associated with a high rate of functional decline and mortality. Large randomized trials have addressed the early phases of treatment for convulsive SE. However, evidence regarding third-line anesthetic treatment and the treatment of nonconvulsive status epilepticus (NCSE) is scarce. One trial addressing management of refractory SE with deep general anesthesia was terminated early due to insufficient recruitment. Multicenter prospective registries, including the Sustained Effort Network for treatment of Status Epilepticus (SENSE), have shed some light on these questions, but many answers are still lacking, such as the influence exerted by distinct EEG patterns in NCSE on the outcome. We therefore initiated a new prospective multicenter observational registry to collect clinical and EEG data that combined may further help in clinical decision-making and defining SE. Methods Sustained effort network for treatment of status epilepticus/European Academy of Neurology Registry on refractory Status Epilepticus (SENSE-II/AROUSE) is a prospective, multicenter registry for patients treated for SE. The primary objectives are to document patient and SE characteristics, treatment modalities, EEG, neuroimaging data, and outcome of consecutive adults admitted for SE treatment in each of the participating centers and to identify factors associated with outcome and refractoriness. To reach sufficient statistical power for multivariate analysis, a cohort size of 3000 patients is targeted. Discussion The data collected for the registry will provide both valuable EEG data and information about specific treatment steps in different patient groups with SE. Eventually, the data will support clinical decision-making and may further guide the planning of clinical trials. Finally, it could help to redefine NCSE and its management. Trial registration NCT number: NCT05839418.