{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,14]],"date-time":"2026-08-14T06:28:14Z","timestamp":1786688894423,"version":"build-2736575974"},"reference-count":66,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,8,13]],"date-time":"2026-08-13T00:00:00Z","timestamp":1786579200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,8,13]],"date-time":"2026-08-13T00:00:00Z","timestamp":1786579200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia Open"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Dravet syndrome (DS) is a rare early\u2010onset developmental and epileptic encephalopathy with persistent delays between seizure onset and diagnosis. The DS'coverED study aimed to characterize current diagnostic timelines by examining each step and its duration, identifying residual barriers, and actionable solutions to optimize the diagnostic process within real\u2010world clinical pathways.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A steering committee\u2014eight pediatric neurologists and one representative from the DS European Federation\u2014developed a survey addressed to European pediatric neurologists experienced in DS management. Responders reported information on their medical practice and data on patients' diagnostic pathways from seizure onset to initiation of DS\u2010specific antiseizure medications (ASMs).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Fifty\u2010three physicians participated in the study. Analysis of 45 patient diagnostic pathways revealed marked heterogeneity in the DS diagnostic pathway. The median age at formal diagnosis was 15\u2009months, with a median interval of 11\u2009months between seizure onset and diagnosis. While half of the patients received a diagnosis within 1 year of seizure onset, 25% were diagnosed after 23\u2009months of age. Diagnostic delays were primarily associated with late referral to expert centers and prolonged access or turnaround times for genetic testing. Although 45% of responders requested genetic testing promptly after initial consultation, more than half waited for confirmatory results before formally communicating the diagnosis. Initiation of DS\u2010specific ASMs was inconsistent\u2014occurring a median of 3 months after diagnosis but exceeding 9 months in 27% of cases\u2014likely influenced by clinician caution, drug availability, and parental concerns regarding the treatment regimen.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>DS'coverED seeks to fill a critical knowledge gap in the DS diagnostic pathway. The study provides healthcare professionals with benchmarks for refining their diagnostic practices and guiding clinical improvements\u2014ongoing clinician education, better healthcare system coordination, and active caregiver engagement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Plain Language Summary<\/jats:title>\n                    <jats:p>The diagnosis of Dravet syndrome, a rare and severe form of childhood epilepsy, is still often delayed after the first seizure. The DS'coverED European survey explored each step of the diagnostic journey and identified residual barriers and opportunities to optimize the time to diagnosis and access to Dravet syndrome\u2010specific antiseizure medications. It provides physicians with actionable solutions that can help improve the diagnostic process of the condition.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/epi4.70328","type":"journal-article","created":{"date-parts":[[2026,8,14]],"date-time":"2026-08-14T05:43:08Z","timestamp":1786686188000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["From first seizure to specific antiseizure medication in Dravet syndrome: Quantifying delays in the\n                    <scp>DS<\/scp>\n                    '\n                    <scp>coverED<\/scp>\n                    study"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0009-0002-6464-0683","authenticated-orcid":false,"given":"Loucas","family":"Christodoulou","sequence":"first","affiliation":[{"name":"Department of Paediatrics Chelsea and Westminster NHS Foundation Trust  London 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