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

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.

Authors

Institutions

Publication Details

Journal
Journal of Neurosurgery Pediatrics
Published
2026-10-28
DOI
https://doi.org/10.3171/2026.5.peds26170
Primary Topic
Epilepsy research and treatment
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Aria Fallah, Robert Partlow Naftel, Jesse M. Skoch, Sean D. McEvoy et al.
1 links
Journal of Neurosurgery Pediatrics
Epilepsy research and treatment
article

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

Aria Fallah, Robert Partlow Naftel, Jesse M. Skoch, Sean D. McEvoy, Kimberly M. Hamilton, Robert John Bollo, Jason Scott Hauptman, Martin Piazza, Hannah E. Goldstein, H. Westley Phillips, Ariana S. Barkley, Chima O. Oluigbo, Joffre E. Olaya, Kurtis Ian Auguste, Brian W. Hanak, Neena I. Marupudi, Scellig S. D. Stone, David Bonda, Jeffrey Steven Raskin, Sandi Karen Lam, Eveline Teresa Hidalgo, Matthew D. Smyth, Jarod L. Roland, Heather Stevens Spader, Afshin Salehi, Nisha Gadgil, Allyson Alexander, Nealen G. Laxpati, Howard L. Weiner, Weston T. Northam, Elizabeth C. Tyler‐Kabara, Taylor J. Abel, Alexander Gregory Weil, George M. Ibrahim, Nir Shimony, Jordan L. Davies, Catherine E. Wassef, Jason K. Chu, Eisha Christian, James T. Rutka, Marian Michael Bercu, Aleena Ghafoor, Victor H. K. Lam
article en

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.

Journal of Neurosurgery Pediatrics
Northwestern University (US), University of North Carolina at Chapel Hill (US), Western University (CA), Cedars-Sinai Medical Center (US), Indiana University Health (US), Cincinnati Children's Hospital Medical Center (US), Boston Children's Hospital (US), Lurie Children's Hospital (US), Seattle Children's Hospital (US), Monroe Carell Jr. Children's Hospital (US), Children's Hospital of Orange County (US), Nebraska Medical Center (US), St. Louis Children's Hospital (US), Primary Children's Hospital (US), Lucile Packard Children's Hospital (US), Children's National (US), University of Arizona (US), Johns Hopkins University (US), Emory University (US), University of California, San Francisco (US), University of Toronto (CA), University of California, Irvine (US), Washington University in St. Louis (US), University of Michigan (US), Ronald Reagan UCLA Medical Center (US), Hospital for Sick Children (CA), UCLA Medical Center (US), Centre Hospitalier Universitaire Sainte-Justine (CA), Riley Hospital for Children (US), NYU Langone Health (US), Children's Hospital Colorado (US), Johns Hopkins All Children's Hospital (US), Monroe Carell Jr. Children's Hospital (US), University of Virginia Children's Hospital (US), Michigan Medicine (US), Phoenix Children's Hospital (US), Helen DeVos Children's Hospital (US), Children's Hospital of Pittsburgh (US), UCSF Benioff Children's Hospital (US), SickKids Foundation (CA), Children's Healthcare of Atlanta (US), Texas Children's Hospital (US), Children's Hospital & Medical Center (US), C. S. Mott Children's Hospital (US), Le Bonheur Children's Hospital (US), Corewell Health (US), Indiana University – Purdue University Indianapolis (US), New York University (US), University of Nebraska Medical Center (US)
Good health and well-being
Openalex Percentile: Top 12%
Epilepsy research and treatment
DOISourceOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.

Laika access coming soon