{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T19:49:47Z","timestamp":1780084187915,"version":"3.54.0"},"reference-count":30,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,3,24]],"date-time":"2023-03-24T00:00:00Z","timestamp":1679616000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100010621","name":"Pediatric Epilepsy Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010621","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia"],"published-print":{"date-parts":[[2023,6]]},"abstract":"Abstract<\/jats:title>Objective<\/jats:title>Improve data\u2010driven research to inform clinical decision\u2010making with pediatric epilepsy surgery patients by expanding the Pediatric Epilepsy Research Consortium Epilepsy Surgery (PERC\u2010Surgery) Workgroup to include neuropsychological data. This article reports on the process and initial success of this effort and characterizes the cognitive functioning of the largest multi\u2010site pediatric epilepsy surgery cohort in the United States.<\/jats:p><\/jats:sec>Methods<\/jats:title>Pediatric neuropsychologists from 18 institutions completed surveys regarding neuropsychological practice and the impact of involvement in the collaborative. Neuropsychological data were entered through an online database. Descriptive analyses examined the survey responses and cognitive functioning of the cohort. Statistical analyses examined which patients were evaluated and if composite scores differed by domain, demographics, measures used, or epilepsy characteristics.<\/jats:p><\/jats:sec>Results<\/jats:title>Positive impact of participation was evident by attendance, survey responses, and the neuropsychological data entry of 534 presurgical epilepsy patients. This cohort, ages 6\u00a0months to 21\u2009years, were majority White and non\u2010Hispanic, and more likely to have private insurance. Mean intelligence quotient (IQ) scores were below to low average, with weaknesses in working memory and processing speed. Full\u2010scale IQ (FSIQ) was lowest for patients with younger age at seizure onset, daily seizures, and magnetic resonance imaging (MRI) abnormalities.<\/jats:p><\/jats:sec>Significance<\/jats:title>We established a collaborative network and fundamental infrastructure to address questions outlined by the Epilepsy Research Benchmarks. There is a wide range in the age and IQ of patients considered for pediatric epilepsy surgery, yet it appears that social determinants of health impact access to care. Consistent with other national cohorts, this US cohort has a downward shift in IQ associated with seizure severity.<\/jats:p><\/jats:sec>","DOI":"10.1111\/epi.17579","type":"journal-article","created":{"date-parts":[[2023,3,10]],"date-time":"2023-03-10T17:20:37Z","timestamp":1678468837000},"page":"1554-1567","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":19,"title":["Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative"],"prefix":"10.1111","volume":"64","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2469-1518","authenticated-orcid":false,"given":"Madison M.","family":"Berl","sequence":"first","affiliation":[{"name":"Department of Neuropsychology, Departments of Psychiatry and Behavioral Sciences Children's Research Institute, Children's National Hospital, George Washington University Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4166-6488","authenticated-orcid":false,"given":"Jennifer I.","family":"Koop","sequence":"additional","affiliation":[{"name":"Pediatric Neuropsychology, Children's Wisconsin Medical College of Wisconsin Department of Neurology Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8974-4169","authenticated-orcid":false,"given":"Alyssa","family":"Ailion","sequence":"additional","affiliation":[{"name":"Boston Children's Hospital, Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1306-5615","authenticated-orcid":false,"given":"Donald J.","family":"Bearden","sequence":"additional","affiliation":[{"name":"Children's Healthcare of Atlanta Emory University School of Medicine Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katrina","family":"Boyer","sequence":"additional","affiliation":[{"name":"Boston Children's Hospital, Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5312-1370","authenticated-orcid":false,"given":"Crystal M.","family":"Cooper","sequence":"additional","affiliation":[{"name":"Neurosciences Center, Cook Children's Medical Center Jane and John Justin Institute for Mind Health Fort Worth Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7700-9834","authenticated-orcid":false,"given":"Amanda M.","family":"Decrow","sequence":"additional","affiliation":[{"name":"Division of Pediatric Psychology and Neuropsychology Atrium Health Levine Children's Hospital Charlotte North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Priscilla H.","family":"Duong","sequence":"additional","affiliation":[{"name":"Ann and Robert H. Lurie Children's Hospital of Chicago Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4318-4236","authenticated-orcid":false,"given":"Patricia","family":"Espe\u2010Pfeifer","sequence":"additional","affiliation":[{"name":"Department of Psychiatry & Pediatrics University of Iowa Hospitals and Clinics Ames Iowa USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marsha","family":"Gabriel","sequence":"additional","affiliation":[{"name":"Neurosciences Center, Cook Children's Medical Center Jane and John Justin Institute for Mind Health Fort Worth Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9981-0529","authenticated-orcid":false,"given":"Elise","family":"Hodges","sequence":"additional","affiliation":[{"name":"Department of Psychiatry University of Michigan Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6836-6891","authenticated-orcid":false,"given":"David F.","family":"Marshall","sequence":"additional","affiliation":[{"name":"Department of Psychiatry University of Michigan Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelly A.","family":"McNally","sequence":"additional","affiliation":[{"name":"Department of Pediatric Psychology and Neuropsychology, Department of Pediatrics Nationwide Children's Hospital, The Ohio State University Columbus Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6107-9280","authenticated-orcid":false,"given":"Andrew E.","family":"Molnar","sequence":"additional","affiliation":[{"name":"Department of Psychiatry and Behavioral Sciences Vanderbilt University Medical Center Nashville Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9036-4005","authenticated-orcid":false,"given":"Emily K.","family":"Olsen","sequence":"additional","affiliation":[{"name":"Department of Pediatric Psychology Oregon Health and Science University Portland Oregon USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0156-855X","authenticated-orcid":false,"given":"Kim E.","family":"Ono","sequence":"additional","affiliation":[{"name":"Children's Healthcare of Atlanta Emory University School of Medicine Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1626-7474","authenticated-orcid":false,"given":"Kristina E.","family":"Patrick","sequence":"additional","affiliation":[{"name":"Department of Neurology, Department of Neurosciences Seattle Children's Hospital, University of Washington Seattle Washington United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brianna M.","family":"Paul","sequence":"additional","affiliation":[{"name":"Department of Neurology University of California San Francisco San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan","family":"Romain","sequence":"additional","affiliation":[{"name":"Children's Health of Orange County Orange California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4763-0045","authenticated-orcid":false,"given":"Leigh N.","family":"Sepeta","sequence":"additional","affiliation":[{"name":"Department of Neuropsychology, Departments of Psychiatry and Behavioral Sciences Children's Research Institute, Children's National Hospital, George Washington University Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca L. 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