Databases, registries, and consortia for pediatric epilepsy and functional neurosurgery: a scoping review from the AANS/CNS Pediatric Section Epilepsy and Functional Research Interest Group
Abstract
OBJECTIVE The practice of pediatric epilepsy and functional neurosurgery relies on high-quality data systems to advance clinical care, evaluate outcomes, and develop evidence. Despite the importance of multicenter research in supporting these goals, no consolidated inventory exists to guide clinicians and investigators seeking relevant registries. Herein, the authors aimed to systematically identify and characterize registries worldwide that collect data relevant to pediatric epilepsy and functional neurosurgery. METHODS A structured search of PubMed was conducted to identify studies referencing registries, databases, or consortia related to pediatric epilepsy or functional neurosurgery. Studies served as discovery tools rather than analytical units. Eligible registries required ongoing data collection and inclusion of pediatric patients and epilepsy and functional neurosurgical interventions. Registries were categorized by scope, and countries were classified as hosts, contributors, or dual-role participants. RESULTS The authors identified 118 registries across 56 countries that collect information relevant to pediatric epilepsy and functional neurosurgery, spanning epilepsy/functional neurosurgery–specific, disease-specific, linkage infrastructure, and insurance- or health system–based databases. Several large collaborative registries, such as vagus nerve stimulation (VNS) outcome registries (e.g., Comprehensive Outcomes Registry in Subjects With Epilepsy Treated With VNS Therapy [CORE-VNS]), pediatric deep brain stimulation (DBS) registries (e.g., Pediatric International DBS [PEDiDBS] Registry, Child & Youth Comprehensive Longitudinal Database for Deep Brain Stimulation [CHILD-DBS] Registry, and German Registry of Paediatric DBS [GEPESTIM]), and the Pediatric Epilepsy Research Consortium [PERC] Epilepsy Surgery Database, provide particularly rich longitudinal data on surgical candidates and neuromodulation outcomes. Overall, registry activity is concentrated in high-income countries across Europe, North America, and East Asia, and there is limited representation from South America, Africa, and South Asia. CONCLUSIONS This scoping review provides the first global catalog of registries relevant to pediatric epilepsy and functional neurosurgery. Although a substantial number of databases were identified, the global registry infrastructure remains fragmented, unevenly distributed, and heavily concentrated in high-income regions. Efforts to harmonize data standards, improve interoperability, and develop a live open-access global registry inventory, all in alignment with the International League Against Epilepsy and Findable, Accessible, Interoperable, and Reusable (FAIR) data principles, are essential for strengthening research capacity and promoting equitable participation in pediatric epilepsy and functional data systems worldwide.
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Authors: Victor H. K. Lam, Aleena Ghafoor, Taylor J. Abel, Kurtis Ian Auguste, Ariana S. Barkley, Marian Michael Bercu, Robert John Bollo, David Bonda, Eisha Christian, Jason K. Chu, Jordan L. Davies, Aria Fallah, Nisha Gadgil, Hannah E. Goldstein, Kimberly M. Hamilton, Brian W. Hanak, Jason Scott Hauptman, Eveline Teresa Hidalgo, Sandi Karen Lam, Nealen G. Laxpati, Neena I. Marupudi, Sean D. McEvoy, Robert Partlow Naftel, Weston T. Northam, Joffre E. Olaya, Chima O. Oluigbo, H. Westley Phillips, Martin Piazza, Jeffrey Steven Raskin, Jarod L. Roland, James T. Rutka, Afshin Salehi, Nir Shimony, Jesse M. Skoch, Matthew D. Smyth, Heather Stevens Spader, Scellig S. D. Stone, Elizabeth C. Tyler‐Kabara, Catherine E. Wassef, Alexander Gregory Weil, Howard L. Weiner, Allyson Alexander, George M. Ibrahim
Institutions: Northwestern University, Johns Hopkins University, Western University, University of North Carolina at Chapel Hill, Phoenix Children's Hospital, Cincinnati Children's Hospital Medical Center, Children's Healthcare of Atlanta, University of California, San Francisco, University of Michigan, Emory University, University of Toronto, Cedars-Sinai Medical Center, Washington University in St. Louis, University of Arizona, Riley Hospital for Children, NYU Langone Health, New York University, University of California, Irvine, Hospital for Sick Children, Centre Hospitalier Universitaire Sainte-Justine, Children's National, Indiana University Health, Children's Hospital of Orange County, Boston Children's Hospital, Michigan Medicine, Children's Hospital Colorado, UCSF Benioff Children's Hospital, UCLA Medical Center, St. Louis Children's Hospital, Texas Children's Hospital, Lucile Packard Children's Hospital, Lurie Children's Hospital, University of Nebraska Medical Center, Primary Children's Hospital, Children's Hospital of Pittsburgh, Helen DeVos Children's Hospital, Johns Hopkins All Children's Hospital, Le Bonheur Children's Hospital, Seattle Children's Hospital, Corewell Health, University of Virginia Children's Hospital, Ronald Reagan UCLA Medical Center, C. S. Mott Children's Hospital, Monroe Carell Jr. Children's Hospital