Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative

• DOI: 10.1111/epi.17579
• Publication Date: 2023-03-10T17:20:37Z
• Authors: Madison M. Berl; Jennifer I. Koop; Alyssa Ailion; Donald J. Bearden; Katrina Boyer; Crystal M. Cooper; Amanda M. Decrow; Priscilla H. Duong; Patricia Espe‐Pfe...; Marsha Gabriel; Elise Hodges; David F. Marshall; Kelly A. McNally; Andrew E. Molnar; Emily K. Olsen; Kim E. Ono; Kristina E. Patrick; Brianna M. Paul; Jonathan Romain; Leigh N. Sepeta; Rebecca L. H. Stilp; Greta N. Wilkening; Michael Zaccariello; Frank Zelko; M. Scott Perry
• Keywords: Neuropsychological Assessment

Improve data-driven research to inform clinical decision-making with pediatric epilepsy surgery patients by expanding the Pediatric Epilepsy Research Consortium Surgery (PERC-Surgery) Workgroup include neuropsychological data. This article reports on process and initial success of this effort characterizes cognitive functioning largest multi-site cohort in United States.Pediatric neuropsychologists from 18 institutions completed surveys regarding practice impact involvement collaborative. Neuropsychological data were entered through an online database. Descriptive analyses examined survey responses cohort. Statistical which evaluated if composite scores differed domain, demographics, measures used, or characteristics.Positive participation was evident attendance, responses, entry 534 presurgical patients. cohort, ages 6 months 21 years, majority White non-Hispanic, more likely have private insurance. Mean intelligence quotient (IQ) below low average, weaknesses working memory processing speed. Full-scale IQ (FSIQ) lowest for younger age at seizure onset, daily seizures, magnetic resonance imaging (MRI) abnormalities.We established a collaborative network fundamental infrastructure address questions outlined Benchmarks. There is wide range considered surgery, yet it appears that social determinants health access care. Consistent other national cohorts, US has downward shift associated severity.