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The prevalence of WD was previously estimated around 20 to 33.3 patients per million for the United States, Europe, and Asia, but data on the prevalence of WD in Germany are limited.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Objectives<\/jats:title>\n                <jats:p>To describe patient characteristics and to assess prevalence of WD in Germany using a representative claims database.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>WD patients were identified in the WIG2 (<jats:italic>Wissenschaftliches Institut f\u00fcr Gesundheits\u00f6konomie und Gesundheitssystemforschung;<\/jats:italic> Scientific Institute for Health Economics and Health Systems Research) benchmark database of 4.5\u00a0million insured Germans by combining ICD-10-coding with WD-specific lab tests and treatments. The study period ranged from 2013 to 2016 for assessing patient characteristics, and to 2018 for prevalence, respectively.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Seventy unique patients were identified. Most patients (86%) were between 18 and 64 years of age and more often male (60%) than female. Two patients (3%) younger than 18 years were included, as well as 8 patients (11%) older than 64 years. Most common WD subtypes were hepatic (57%), psychiatric (49%), and neurologic (44%). Average prevalence was 20.3 patients per million (range: 17.8\u201324.4), with similar results for two-year prevalence. Generally, prevalence increased steadily over the study period. Observed mortality was low, with only one death during the study period.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>This study adds valuable real-world data on the prevalence and patient characteristics of WD in Germany. Generally, our findings align with other reports and contribute to the global understanding of WD epidemiology. Still, regional and temporal trends remain to be investigated more thoroughly to further the understanding of the natural history and epidemiology of this rare disease.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13023-024-03351-2","type":"journal-article","created":{"date-parts":[[2024,9,11]],"date-time":"2024-09-11T17:03:14Z","timestamp":1726074194000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Epidemiology of Wilson disease in Germany \u2013 real-world insights from a claims data study"],"prefix":"10.1186","volume":"19","author":[{"given":"Shona","family":"Fang","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2699-4085","authenticated-orcid":false,"given":"Peter","family":"Hedera","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Borchert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Schultze","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karl Heinz","family":"Weiss","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,9,11]]},"reference":[{"issue":"9559","key":"3351_CR1","doi-asserted-by":"publisher","first-page":"397","DOI":"10.1016\/S0140-6736(07)60196-2","volume":"369","author":"A Ala","year":"2007","unstructured":"Ala A, Walker AP, Ashkan K, Dooley JS, Schilsky ML. 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Accordingly, approval of an institutional review board (IRB) or ethics committee was not required.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics statement"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"KHW has no disclosures related to this work. KHW advises for Alexion, Univar, Orphalan, Desitin, Tilomed, Ultragenyx, Pfizer, Vivet therapeutics, Abbvie. SF is an employee of Alexion, AstraZeneca Rare Disease, and may own stock of AstraZeneca. MS was an employee of Kantar Health at the time of the study, which was contracted by Alexion to conduct this study, and he now works for ZEG \u2013 Berlin Center for Epidemiology and Health Research GmbH. JB is an employee of WIG2 GmbH, which was contracted by Alexion to conduct this study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"335"}}