@article{288e08b7ee7d4f67b01af8e3f0ad4b69,
title = "Gaps and opportunities in refractory status epilepticus research in children: A multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG)",
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",
author = "{S{\'a}nchez Fern{\'a}ndez}, Iv{\'a}n and Abend, {Nicholas S.} and Satish Agadi and Sookee An and Ravindra Arya and Carpenter, {Jessica L.} and Chapman, {Kevin E.} and Gaillard, {William D.} and Glauser, {Tracy A.} and Goldstein, {David B.} and Goldstein, {Joshua L.} and Goodkin, {Howard P.} and Hahn, {Cecil D.} and Heinzen, {Erin L.} and Mikati, {Mohamad A.} and Katrina Peariso and Pestian, {John P.} and Margie Ream and Riviello, {James J.} and Tasker, {Robert C.} and Korwyn Williams and Tobias Loddenkemper",
note = "Funding Information: Tobias Loddenkemper serves on the Laboratory Accreditation Board for Long Term (Epilepsy and ICU) Monitoring (ABRET), serves as a member of the American Clinical Neurophysiology Council (ACNS), serves on the American Board of Clinical Neurophysiology, serves as an Associate Editor of Seizure, performs Video EEG longterm monitoring, EEGs, and other electrophysiological studies at Children's Hospital Boston and bills for these procedures, receives support from NIH/NINDS 1R21NS076859-01 (2011–2013), is supported by a Career Development Fellowship Award from Harvard Medical School and Children's Hospital Boston, by the Program for Quality and Safety at Children's Hospital Boston, by the Payer Provider Quality Initiative, receives funding from the Epilepsy Foundation of America ( EF-213583 and EF-213882 ), from the Center for Integration of Medicine & Innovative Technology (CIMIT) , the Epilepsy Therapy Project , the Pediatric Epilepsy Research Foundation, Cure and received investigator initiated research support from Eisai Inc. and Lundbeck. Funding Information: This study and consortium was funded by the Epilepsy Foundation of America ( EF-213583 , Targeted Initiative for Health Outcomes) and by the American Epilepsy Society/Epilepsy Foundation of America Infrastructure Award. Funding Information: Tracy A. Glauser is funded by NIH grants 2U01-NS045911 , U10-NS077311 , R01-NS053998 , R01-NS062756 , R01-NS043209 , R01-LM011124 , and R01-NS065840 . He has received consulting fees from Supernus, Sunovion, Eisai, UCB, Lundbeck and Questcor, is on the speakers bureau of Eisai and Questcor. He also serves as an expert consultant for the US Department of Justice and has received compensation for work as an expert on medico-legal cases. He receives royalties from a patent license from AssureRx Health. Funding Information: Mohamad Mikati receives research funding from the following entities: NIH1R1 NS075017-01A1 , Robertson Foundation grant fund number 3838933 , Glaxo funds: GSK RTG113284 and GSK RTG113388 , Pfizer funds: A0081041 and A0081106 and the Burkhead Foundation . He has received honoraria for lectures or advisory board consultations from Lundbeck, Cubist, Athena, Novartis and Cyberonics. He receives royalties from Springer for a co-authored book. Funding Information: Iv{\'a}n S{\'a}nchez Fern{\'a}ndez is funded by a grant for the study of Epileptic Encephalopathies from “Fundaci{\'o}n Alfonso Mart{\'i}n Escudero” . Funding Information: Cecil Hahn serves on the council of the American Clinical Neurophysiology Society and receives research support from the Canadian Institutes of Health Research, the SickKids Foundation, and the PSI Foundation. Funding Information: Howard P. Goodkin receives funding from the NIH . Funding Information: William Davis Gaillard is supported by NICHD 1P30HD40677 , NIMH MH084961 ; NSF 095998 ; CDC UO1DP003255 ; NIMH R21MH092615 ; and PCORE . He is a salaried employee of Children's National Medical Center based upon billings from clinical care. He holds stock in General Electric and Siemens. He serves on the editorial boards of Epilepsia and Epilepsy Research. He is a task force chair for ILAE, and on the executive board of the AES. Funding Information: Robert C. Tasker receives research support from NIH UO1 NS081041 , Boston Children's Hospital and the Epilepsy Foundation of America . He receives royalties from Oxford University Press, Lippincott Williams and Wilkins, and Up To Date. Funding Information: Nicholas Abend is funded by NIH K23NS076550 and the Children's Hospital of Philadelphia Department of Pediatrics . He receives royalties from Demos Medical Publishing. ",
year = "2014",
month = feb,
doi = "10.1016/j.seizure.2013.10.004",
language = "English (US)",
volume = "23",
pages = "87--97",
journal = "Seizure",
issn = "1059-1311",
publisher = "W.B. Saunders Ltd",
number = "2",
}