{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,11]],"date-time":"2026-07-11T09:20:48Z","timestamp":1783761648488,"version":"3.55.0"},"reference-count":38,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2023,8,7]],"date-time":"2023-08-07T00:00:00Z","timestamp":1691366400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","award":["U01DP006089"],"award-info":[{"award-number":["U01DP006089"]}],"id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Administrative codes to identify people with rare epilepsies in electronic health records are limited. The current study evaluated the use of keyword search as an alternative method for rare epilepsy cohort creation using electronic health records data.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Data included clinical notes from encounters with International Classification of Diseases, Ninth Revision (ICD\u20109) codes for seizures, epilepsy, and\/or convulsions during 2010\u20132014, across six health care systems in New York City. We identified cases with rare epilepsies by searching clinical notes for keywords associated with 33 rare epilepsies. We validated cases via manual chart review. We compared the performance of keyword search to manual chart review using positive predictive value (PPV), sensitivity, and <jats:italic>F<\/jats:italic>\u2010score. We selected an initial combination of keywords using the highest <jats:italic>F<\/jats:italic>\u2010scores.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Data included clinical notes from 77\u2009924 cases with ICD\u20109 codes for seizures, epilepsy, and\/or convulsions. The all\u2010keyword search method identified 6095 candidates, and manual chart review confirmed that 2068 (34%) had a rare epilepsy. The initial combination method identified 1862 cases with a rare epilepsy, and this method performed as follows: PPV median\u2009=\u2009.64 (interquartile range [IQR]\u2009=\u2009.50\u2013.81, range\u2009=\u2009.20\u20131.00), sensitivity median\u2009=\u2009.93 (IQR\u2009=\u2009.76\u20131.00, range\u2009=\u2009.10\u20131.00), and <jats:italic>F<\/jats:italic>\u2010score median\u2009=\u2009.71 (IQR\u2009=\u2009.63\u2013.85, range\u2009=\u2009.18\u20131.00). Using this method, we identified four cohorts of rare epilepsies with over 100 individuals, including infantile spasms, Lennox\u2013Gastaut syndrome, Rett syndrome, and tuberous sclerosis complex. We identified over 50 individuals with two rare epilepsies that do not have specific ICD\u201010 codes for cohort creation (epilepsy with myoclonic atonic seizures, Sturge\u2013Weber syndrome).<\/jats:p><\/jats:sec><jats:sec><jats:title>Significance<\/jats:title><jats:p>Keyword search is an effective method for cohort creation. These findings can improve identification and surveillance of individuals with rare epilepsies and promote their referral to specialty clinics, clinical research, and support groups.<\/jats:p><\/jats:sec>","DOI":"10.1111\/epi.17725","type":"journal-article","created":{"date-parts":[[2023,7,27]],"date-time":"2023-07-27T13:18:50Z","timestamp":1690463930000},"page":"2738-2749","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Creating rare epilepsy cohorts using keyword search in electronic health records"],"prefix":"10.1111","volume":"64","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0293-0108","authenticated-orcid":false,"given":"Kristen","family":"Barbour","sequence":"first","affiliation":[{"name":"University of California San Diego  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9380-0207","authenticated-orcid":false,"given":"Niu","family":"Tian","sequence":"additional","affiliation":[{"name":"Centers for Disease Control and Prevention  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8230-8364","authenticated-orcid":false,"given":"Elissa G.","family":"Yozawitz","sequence":"additional","affiliation":[{"name":"Montefiore Medical Center Albert Einstein College of Medicine  Bronx New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steven","family":"Wolf","sequence":"additional","affiliation":[{"name":"Boston Children's Health Physicians  Hawthorne New York USA"},{"name":"New York Medical College  Valhalla New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patricia E.","family":"McGoldrick","sequence":"additional","affiliation":[{"name":"Boston Children's Health Physicians  Hawthorne New York USA"},{"name":"New York Medical College  Valhalla New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7285-1195","authenticated-orcid":false,"given":"Tristan T.","family":"Sands","sequence":"additional","affiliation":[{"name":"Columbia University Irving Medical Center  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aaron","family":"Nelson","sequence":"additional","affiliation":[{"name":"New York University Langone Medical Center  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natasha","family":"Basma","sequence":"additional","affiliation":[{"name":"Weill Cornell Medicine  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6705-0932","authenticated-orcid":false,"given":"Zachary M.","family":"Grinspan","sequence":"additional","affiliation":[{"name":"Weill Cornell Medicine  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,8,7]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-67144-4_30"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/08830738211019578"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.15966"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.4137\/BII.S38308"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2007-3424"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2013.09.025"},{"key":"e_1_2_11_8_1","first-page":"1191","article-title":"EpiDEA: extracting structured epilepsy and seizure information from patient discharge summaries for cohort identification","volume":"2012","author":"Cui L","year":"2012","journal-title":"AMIA Annu Symp Proc"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1200\/CCI.19.00134"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.2196\/33192"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/epi4.12095"},{"key":"e_1_2_11_12_1","unstructured":"PCORI.New York City Clinical Data Research Network (NYC\u2010CDRN). 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