Pediatric Neurology Research in the Twenty-First Century: Status, Challenges, and Future Directions Post–COVID-19 - 10/11/20

Doi : 10.1016/j.pediatrneurol.2020.08.012

Joshua L. Bonkowsky, MD, PhD ^a,^b,^⁎ , Gabrielle deVeber, MD, MHSc ^c, Barry E. Kosofsky, MD, PhD ^d
the Child Neurology Society Research Committee^{^∗}
Erika F. Augustine, MD, PhD, Alexander Bassuk, MD, PhD, Amy R. Brooks-Kayal, MD, Ryan J. Felling, MD, PhD, Heather J. Fullerton, MD, MAS, Hannah C. Glass, MDCM, MAS, Zachary M. Grinspan, MD, MS, Réjean M. Guerriero, DO, Michael Johnston, MD, Ariel Lyons-Warren, MD, PhD, Steven Maricich, MD, PhD, Patricia L. Musolino, MD, PhD, Scott Pomeroy, MD, PhD, Brenda E. Porter, MD, PhD, Jong M. Rho, MD, Alexander Rotenberg, MD, PhD, Bradley L. Schlaggar, MD, PhD, Renée A. Shellhaas, MD, MS, Elliott H. Sherr, MD, PhD, Janet S. Soul, MDCM.
Erika F. Augustine, MD, PhD, Alexander Bassuk, MD, PhD, Amy R. Brooks-Kayal, MD, Ryan J. Felling, MD, PhD, Heather J. Fullerton, MD, MAS, Hannah C. Glass, MDCM, MAS, Zachary M. Grinspan, MD, MS, Réjean M. Guerriero, DO, Michael Johnston, MD, Ariel Lyons-Warren, MD, PhD, Steven Maricich, MD, PhD, Patricia L. Musolino, MD, PhD, Scott Pomeroy, MD, PhD, Brenda E. Porter, MD, PhD, Jong M. Rho, MD, Alexander Rotenberg, MD, PhD, Bradley L. Schlaggar, MD, PhD, Renée A. Shellhaas, MD, MS, Elliott H. Sherr, MD, PhD, Janet S. Soul, MDCM

^a Division of Pediatric Neurology, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah
^b Primary Children's Hospital, Intermountain Healthcare, Salt Lake City, Utah
^c Hospital for Sick Children Research Institute, University of Toronto, Toronto, Ontario, Canada
^d Department of Pediatrics, New York-Presbyterian/Weill Cornell Medicine, New York, New York

^∗Communications should be addressed to: Dr. Bonkowsky; Department of Pediatrics; University of Utah School of Medicine; 295 Chipeta Way; Salt Lake City, UT 84108.Department of Pediatrics, University of Utah School of Medicine295 Chipeta WaySalt Lake CityUT84108

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Abstract

Background

The year 2020 marked a fundamental shift in the pediatric neurology field. An impressive positive trajectory of advances in patient care and research faced sudden global disruptions by the coronavirus disease 2019 pandemic and by an international movement protesting racial, socioeconomic, and health disparities. The disruptions revealed obstacles and fragility within the pediatric neurology research mission. However, renewed commitment offers unique opportunities for the pediatric neurology research community to enhance and prioritize research directions for the coming decades.

Methods

The Research Committee of the Child Neurology Society evaluated the challenges and opportunities facing the pediatric neurology research field, including reviewing published literature, synthesizing publically available data, and conducting a survey of pediatric neurologists.

Results

We identified three priority domains for the research mission: funding levels, active guidance, and reducing disparities. Funding levels: to increase funding to match the burden of pediatric neurological disease; to tailor funding mechanisms and strategies to support clinical trial efforts unique to pediatric neurology; and to support investigators across their career trajectory. Active guidance: to optimize infrastructure and strategies, to leverage novel therapeutics, enhance data collection, and improve inclusion of children in clinical trials. Reducing disparities: to reduce health disparities in children with neurological disease, to develop proactive measures to enhance workforce diversity and inclusion, and increase avenues to balance work-life obligations for investigators.

Conclusions

In this uniquely challenging epoch, the pediatric neurology research community has a timely and important mission to re-engage the public and government, advancing the health of children with neurological conditions.

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Keywords : Pediatric, Research, Training, NIH, Disparities, Career, Funding, Neuroscience

Plan

Communication and outreach

National survey

Research domains: obstacles, opportunities, and suggestions

Funding levels

Active guidance of the research mission

Reducing disparities

Conclusions

	E.F.A.: Departments of Neurology and Pediatrics, University of Rochester Medical Center, Rochester, New York. A.R.B.-K.: Departments of Pediatrics and Neurology, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, Colorado. R.J.F.: Departments of Neurology and Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland. H.J.F.: Department of Neurology and Weill Institute for Neuroscience, University of California, San Francisco, California; Department of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, California. H.C.G.: Department of Neurology and Weill Institute for Neuroscience, University of California, San Francisco, California; Department of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, California; Department of Epidemiology and Biostatistics, University of California, San Francisco, California. Z.M.G.: Departments of Population Health Sciences and Pediatrics, Weill Cornell Medicine, New York, New York. R.M.G.: Division of Pediatric and Developmental Neurology, Department of Neurology, Washington University School of Medicine, St. Louis, Missouri. M.J.: Kennedy Krieger Institute, Baltimore, Maryland; Departments of Neurology and Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland. A.L.-W.: Division of Child Neurology, Department of Pediatrics, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas. S.M.: Allievex Corporation, Marblehead, Massachusetts. P.L.M.: Department of Neurology and Center for Genomic Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts. B.E.P.: Stanford University, Palo Alto, California. J.MR.: Rady Children's Hospital, San Diego, La Jolla, California. A.R.: Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts. B.L.S.: Kennedy Krieger Institute, Baltimore, Maryland; Departments of Neurology and Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland. R.A.S.: Department of Pediatrics (Pediatric Neurology), Michigan Medicine, University of Michigan, Ann Arbor, Michigan. E.H.S.: Departments of Neurology and Pediatrics, Institute of Human Genetics, Weill Institute for Neuroscience, University of California, San Francisco, California. J.S.S.: Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
	Study funding: The authors report no funding for this study.
	Conflicts of interest: J.L.B. serves as a Consultant at bluebird bio, Calico, Enzyvant, Denali Therapeutics, Neurogene, and Passage Bio; is in the Board of Directors of wFluidx; owns a Stock in Orchard Therapeutics; receives royalties from Manson Publishing, BioMerieux (spouse); received research support from the NIH and Vanishing White Matter Foundation. G.d.V. serves as a Consultant at Johnson and Johnson (Janssen); expert testimony: medicolegal consults; owns a stock in NonoInc (spouse) and Thornhill Medical (spouse); received research support from the NIH. B.E.K. is a President and Founder of ANSwers Neuroscience. E.F.A. received research support from the NIH (NINDS, NCATS), Batten Disease Support and Research Association, and Abeona Therapeutics; serves as a Consultant at RegenxBio, Bracket/Signant Health, Neurogene Inc, Beyond Batten Disease Foundation, and PTC Therapeutics. A.R.B.-K. received research support from the NIH (NINDS). A.L.W. received research support from the NIH (CNCDP). R.J.F. received research support from the NIH. H.F. received research support from the NIH and grant from Marc and Lynne Benioff. H.C.G. received research support from the NIH and owns a stock in Elemeno Health (spouse). Z.G. serves as a Consultant at Bio-pharm Solutions and AlphaInsights; received research support from Pediatric Epilepsy Research Foundation, Weill Cornell Medicine, BAND Foundation, Epilepsy Foundation, and the Morris and Alma Schapiro Fund. R.M.G. received research support from Washington University in St. Louis ICTS. M.J. reports no conflicts of interest. S.M. owns a stock in Allievex Corporation. P.L.M. serves as a Consultant at Biogen, Minoryx, Vertex, and bluebird bio; received research support from the NIH, Child Neurology Foundation, Hearst Foundation, MGH ECOR, and Minoryx Pharmaceuticals. S.L.P. received research support from the NIH (NCI, NICHD, and NINDS). B.E.P. serves as a Consultant at Jazz Pharmaceuticals; received research support from EISAI, NINDS, and TESS Foundation; owns a stock in Jansen, Unity Bioscience (spouse). J.R. received research support from the NIH (NINDS) and Canadian Institutes for Health Research; serves as a Consultant at Eisai, UCB, Mallinckrodt, and Nutricia. A.R. received research support from the NIH (NINDS, NIMH), Brainsway, CRE Medical, Encoded, EpiHunter, Kintai, Roche, SSADHD Foundation; is a Cofounder and SAB member of Neuromotion Labs; Consultant/SAB: Epihunter, Neural Dynamics, NeuroRex, Nexstim, Roche. B.L.S. received research support from the NIH (NINDS, NICHD); serves as a Consultant at Rocket Pharmaceuticals and John Merck Foundation. R.A.S. received research support from the PCORI, NIH, and Pediatric Epilepsy Research Foundation; serves as a Consultant at Epilepsy Study Consortium; receives royalties from UpToDate (authorship of topics related to neonatal seizures); is an Associate Editor, Neurology. E.H.S. is a Board Member of Jacaranda Biosciences, received research support from the NIH, Simons Foundation, and DDX3X Foundation; J.S.S. received research support from the PCORI, NIH, and CRICO, and receives royalties from UpToDate (peer reviewer).