title: Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG).
abstract: OBJECTIVE
  Status epilepticus (SE) is a life-threatening condition that can be refractory to initial treatment. Randomized controlled studies to guide treatment choices, especially beyond first-line drugs, are not available. This report summarizes the evidence that guides the management of refractory convulsive SE (RCSE) in children, defines gaps in our clinical knowledge and describes the development and works of the 'pediatric Status Epilepticus Research Group' (pSERG).
  
  
  METHODS
  A literature review was performed to evaluate current gaps in the pediatric SE and RCSE literature. In person and online meetings helped to develop and expand the pSERG network.
  
  
  RESULTS
  The care of pediatric RCSE is largely based on extrapolations of limited evidence derived from adult literature and supplemented with case reports and case series in children. No comparative effectiveness trials have been performed in the pediatric population. Gaps in knowledge include risk factors for SE, biomarkers of SE and RCSE, second- and third-line treatment options, and long-term outcome.
  
  
  CONCLUSIONS
  The care of children with RCSE is based on limited evidence. In order to address these knowledge gaps, the multicenter pSERG was established to facilitate prospective collection, analysis, and sharing of de-identified data and biological specimens from children with RCSE. These data will allow identification of treatment strategies associated with better outcomes and delineate evidence-based interventions to improve the care of children with SE.
authors.affiliation: Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States; Department of Child Neurology, Hospital Sant Joan de Déu, University of Barcelona, Spain.
authors.forename: Iván
authors.initials: I
authors.lastname: Sánchez Fernández
authors.affiliation: Division of Neurology, The Children's Hospital of Philadelphia, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, United States.
authors.forename: Nicholas S
authors.initials: NS
authors.lastname: Abend
authors.affiliation: Section of Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, TX, United States.
authors.forename: Satish
authors.initials: S
authors.lastname: Agadi
authors.affiliation: Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States.
authors.forename: Sookee
authors.initials: S
authors.lastname: An
authors.affiliation: Comprehensive Epilepsy Center, Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, United States.
authors.forename: Ravindra
authors.initials: R
authors.lastname: Arya
authors.affiliation: Department of Epilepsy, Neurophysiology, and Critical Care Neurology, The Children's National Medical Center, George Washington University School of Medicine and Health Sciences, Washington, DC, United States.
authors.forename: Jessica L
authors.initials: JL
authors.lastname: Carpenter
authors.affiliation: Department of Pediatrics and Neurology, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, United States.
authors.forename: Kevin E
authors.initials: KE
authors.lastname: Chapman
authors.affiliation: Department of Epilepsy, Neurophysiology, and Critical Care Neurology, The Children's National Medical Center, George Washington University School of Medicine and Health Sciences, Washington, DC, United States.
authors.forename: William D
authors.initials: WD
authors.lastname: Gaillard
authors.affiliation: Comprehensive Epilepsy Center, Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, United States.
authors.forename: Tracy A
authors.initials: TA
authors.lastname: Glauser
authors.affiliation: Center for Human Genome Variation, Duke University Medical Center, Duke University, Durham, NC, United States.
authors.forename: David B
authors.initials: DB
authors.lastname: Goldstein
authors.affiliation: Division of Neurology, Department of Pediatrics, Ann & Robert Lurie's Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
authors.forename: Joshua L
authors.initials: JL
authors.lastname: Goldstein
authors.affiliation: Department of Neurology and Department of Pediatrics, The University of Virginia Health System, Charlottesville, VA, United States.
authors.forename: Howard P
authors.initials: HP
authors.lastname: Goodkin
authors.affiliation: Division of Neurology, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
authors.forename: Cecil D
authors.initials: CD
authors.lastname: Hahn
authors.affiliation: Center for Human Genome Variation, Duke University Medical Center, Duke University, Durham, NC, United States.
authors.forename: Erin L
authors.initials: EL
authors.lastname: Heinzen
authors.affiliation: Division of Pediatric Neurology, Duke University Medical Center, Duke University, Durham, NC, United States.
authors.forename: Mohamad A
authors.initials: MA
authors.lastname: Mikati
authors.affiliation: Comprehensive Epilepsy Center, Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, United States.
authors.forename: Katrina
authors.initials: K
authors.lastname: Peariso
authors.affiliation: Comprehensive Epilepsy Center, Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, United States.
authors.forename: John P
authors.initials: JP
authors.lastname: Pestian
authors.affiliation: Division of Pediatric Neurology, Duke University Medical Center, Duke University, Durham, NC, United States.
authors.forename: Margie
authors.initials: M
authors.lastname: Ream
authors.affiliation: Division of Pediatric Neurology, Department of Neurology, New York University Langone Medical Center, New York University School of Medicine, New York, NY, United States.
authors.forename: James J
authors.initials: JJ
authors.lastname: Riviello
authors.affiliation: Department of Neurology, Department of Anesthesiology, Perioperative and Pain Medicine, Division of Critical Care, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States.
authors.forename: Robert C
authors.initials: RC
authors.lastname: Tasker
authors.affiliation: Division of Pediatric Neurology, Phoenix Children's Hospital, Phoenix, AZ, United States.
authors.forename: Korwyn
authors.initials: K
authors.lastname: Williams
authors.affiliation: Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States. Electronic address: tobias.loddenkemper@childrens.harvard.edu.
authors.forename: Tobias
authors.initials: T
authors.lastname: Loddenkemper
mesh_terms: D000927:Anticonvulsants / Q000627:therapeutic use; D001569:Benzodiazepines / Q000627:therapeutic use; D002648:Child; D019317:Evidence-Based Medicine; D006801:Humans; D015337:Multicenter Studies as Topic; D012107:Research Design; D013226:Status Epilepticus / Q000453:epidemiology / Q000503:physiopathology / Q000628:therapy*
chemical_list: D000927:Anticonvulsants; D001569:Benzodiazepines
keywords: Children; Epilepsy; Research network; Seizures; Status epilepticus; Treatment guidelines