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.
Original language | English |
---|---|
Pages (from-to) | 2-12 |
Number of pages | 11 |
Journal | Pediatric Neurology |
Volume | 113 |
DOIs | |
State | Published - Dec 2020 |
Keywords
- Career
- Disparities
- Funding
- NIH
- Neuroscience
- Pediatric
- Research
- Training
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In: Pediatric Neurology, Vol. 113, 12.2020, p. 2-12.
Research output: Contribution to journal › Article › peer-review
TY - JOUR
T1 - Pediatric Neurology Research in the Twenty-First Century
T2 - Status, Challenges, and Future Directions Post–COVID-19
AU - Bonkowsky, Joshua L.
AU - deVeber, Gabrielle
AU - Kosofsky, Barry E.
AU - Augustine, Erika F.
AU - Bassuk, Alexander
AU - Brooks-Kayal, Amy R.
AU - Felling, Ryan J.
AU - Fullerton, Heather J.
AU - Glass, Hannah C.
AU - Grinspan, Zachary M.
AU - Guerriero, Réjean M.
AU - Johnston, Michael
AU - Lyons-Warren, Ariel
AU - Maricich, Steven
AU - Musolino, Patricia L.
AU - Pomeroy, Scott
AU - Porter, Brenda E.
AU - Rho, Jong M.
AU - Rotenberg, Alexander
AU - Schlaggar, Bradley L.
AU - Shellhaas, Renée A.
AU - Sherr, Elliott H.
AU - Soul, Janet S.
N1 - Funding Information: 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). Funding Information: Research advances in pediatric neurology are dependent on adequate financial support. The US NIH is the primary funding source in overall amount, oversight, and policy setting. NIH and, in particular, NINDS vitally support basic, translational, and clinical pediatric neurology research. There are other NIH agencies that provide funding to pediatric neurology-related research, for example, autism research is typically funded by the National Institute of Mental Health. NIH and its staff are a crucial and appreciated partner in research for pediatric neurology. Their mission is complicated by limitations in funding amounts and changing legislative regulations. NIH funding, and NIH regulatory and policy mandates, also require ongoing engagement with and response to the public and government policy makers. Funding Information: We thank Phillip Pearl and the Child Neurology Society Executive Committee for their helpful advice and comments and acknowledge Emily McConnell and Roger Larson for their assistance with the Child Neurology Society member survey. Author contributions: All authors contributed to and edited drafts of the manuscript, and read and approved the final manuscript. 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). Publisher Copyright: © 2020 Elsevier Inc.
PY - 2020/12
Y1 - 2020/12
N2 - 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.
AB - 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.
KW - Career
KW - Disparities
KW - Funding
KW - NIH
KW - Neuroscience
KW - Pediatric
KW - Research
KW - Training
UR - http://www.scopus.com/inward/record.url?scp=85091494488&partnerID=8YFLogxK
U2 - 10.1016/j.pediatrneurol.2020.08.012
DO - 10.1016/j.pediatrneurol.2020.08.012
M3 - Article
C2 - 32979654
AN - SCOPUS:85091494488
SN - 0887-8994
VL - 113
SP - 2
EP - 12
JO - Pediatric Neurology
JF - Pediatric Neurology
ER -