Review

. 2014 Feb;23(2):87-97.

doi: 10.1016/j.seizure.2013.10.004. Epub 2013 Oct 16.

Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG)

Iván Sánchez Fernández¹, Nicholas S Abend², Satish Agadi³, Sookee An⁴, Ravindra Arya⁵, Jessica L Carpenter⁶, Kevin E Chapman⁷, William D Gaillard⁶, Tracy A Glauser⁵, David B Goldstein⁸, Joshua L Goldstein⁹, Howard P Goodkin¹⁰, Cecil D Hahn¹¹, Erin L Heinzen⁸, Mohamad A Mikati¹², Katrina Peariso⁵, John P Pestian⁵, Margie Ream¹², James J Riviello Jr¹³, Robert C Tasker¹⁴, Korwyn Williams¹⁵, Tobias Loddenkemper¹⁶; Pediatric Status Epilepticus Research Group (pSERG)

Affiliations

¹ 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.
² Division of Neurology, The Children's Hospital of Philadelphia, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, United States.
³ Section of Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, TX, United States.
⁴ Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States.
⁵ Comprehensive Epilepsy Center, Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, United States.
⁶ 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.
⁷ Department of Pediatrics and Neurology, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, United States.
⁸ Center for Human Genome Variation, Duke University Medical Center, Duke University, Durham, NC, United States.
⁹ Division of Neurology, Department of Pediatrics, Ann & Robert Lurie's Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
¹⁰ Department of Neurology and Department of Pediatrics, The University of Virginia Health System, Charlottesville, VA, United States.
¹¹ Division of Neurology, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
¹² Division of Pediatric Neurology, Duke University Medical Center, Duke University, Durham, NC, United States.
¹³ Division of Pediatric Neurology, Department of Neurology, New York University Langone Medical Center, New York University School of Medicine, New York, NY, United States.
¹⁴ 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.
¹⁵ Division of Pediatric Neurology, Phoenix Children's Hospital, Phoenix, AZ, United States.
¹⁶ 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.

PMID: 24183923
PMCID: PMC6387832
DOI: 10.1016/j.seizure.2013.10.004

Review

Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG)

Iván Sánchez Fernández et al. Seizure. 2014 Feb.

. 2014 Feb;23(2):87-97.

doi: 10.1016/j.seizure.2013.10.004. Epub 2013 Oct 16.

Authors

Affiliations

¹ 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.
² Division of Neurology, The Children's Hospital of Philadelphia, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, United States.
³ Section of Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, TX, United States.
⁴ Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States.
⁵ Comprehensive Epilepsy Center, Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, United States.
⁶ 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.
⁷ Department of Pediatrics and Neurology, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, United States.
⁸ Center for Human Genome Variation, Duke University Medical Center, Duke University, Durham, NC, United States.
⁹ Division of Neurology, Department of Pediatrics, Ann & Robert Lurie's Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
¹⁰ Department of Neurology and Department of Pediatrics, The University of Virginia Health System, Charlottesville, VA, United States.
¹¹ Division of Neurology, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
¹² Division of Pediatric Neurology, Duke University Medical Center, Duke University, Durham, NC, United States.
¹³ Division of Pediatric Neurology, Department of Neurology, New York University Langone Medical Center, New York University School of Medicine, New York, NY, United States.
¹⁴ 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.
¹⁵ Division of Pediatric Neurology, Phoenix Children's Hospital, Phoenix, AZ, United States.
¹⁶ 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.

PMID: 24183923
PMCID: PMC6387832
DOI: 10.1016/j.seizure.2013.10.004

Abstract

Purpose: 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.

Conclusion: 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.

Keywords: Children; Epilepsy; Research network; Seizures; Status epilepticus; Treatment guidelines.

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Conflict of interest statement

All other authors have no disclosures or conflicts of interests related to this study.

Figures

**Fig. 1.**
Approach to literature review in our manuscript. This figure outlines the literature review in this manuscript that follows the PRISMA scheme.

See this image and copyright information in PMC

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Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG)

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Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG)

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