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Affecting all age groups MG is a chronic disease with unpredictable fluctuations and a range of symptom expression which can require costly immunosuppressive therapy and intensive care critically influencing economic burden. Here we aim to elucidate both the personal and societal economic burden of MG. Data were used from two sources: (1) a cross sectional study of MG patients registered in the German Myasthenia Society (DMG) collected by a survey in 2019 (n\u2009=\u20091660), and (2) from a dataset provided by a German health insurance company covering the period from 01\/01\/2014 to 31\/12\/2019 (n\u2009=\u2009750) and categorized to similar subgroups for comparison. Individual and societal economic burden was highest in patients with intensified medical treatment. Absence days from work per patient year in the first year after index in claims data were 67.1\u00a0days (95% CI 66.1\u201368.2) (referring to n\u2009=\u2009260 non-retired patients). Of 686 patients with early onset (&lt;\u200950\u00a0years) MG 260 (41.2%) reported loss of income due to MG in DMG data. Average inpatient costs from claims data in patients with intensified treatment (38,669\u20ac; 95% CI 38,627\u201338,712\u20ac) were particularly high compared with standard treatment (2980\u20ac; 95% CI 2975\u20132986\u20ac) and to no MG-related treatment (887\u20ac; 95% CI 877\u2013886\u20ac). MG represents a major economic burden for the individual and the health care system. The costs are positively associated with the severity of disease. The economic burden is particularly high for working patients. UCB Pharma provided financial support for the subanalysis, but was not involved in the design of the study.<\/jats:p>\n                  <jats:p>\n                    <jats:italic>Trial registration<\/jats:italic>\n                    : clinicaltrials.gov, NCT03979521, submitted: June 7, 2019, first patient enrolled: May 1, 2019,\n                    <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xlink:href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT03979521\" ext-link-type=\"uri\">https:\/\/clinicaltrials.gov\/ct2\/show\/NCT03979521<\/jats:ext-link>\n                    .\n                  <\/jats:p>","DOI":"10.1038\/s41598-025-91372-7","type":"journal-article","created":{"date-parts":[[2025,2,24]],"date-time":"2025-02-24T22:22:47Z","timestamp":1740435767000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["The economic burden of Myasthenia gravis from the patient\u00b4s perspective and reflected in German claims data"],"prefix":"10.1038","volume":"15","clinical-trial-number":[{"clinical-trial-number":"nct03979521","registry":"10.18810\/clinical-trials-gov"}],"author":[{"given":"Sophie","family":"Lehnerer","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meret","family":"Herdick","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antje","family":"Mevius","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulrike","family":"Grittner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pauline","family":"Gansel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lars","family":"Joeres","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jutta","family":"Biskup","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andreas","family":"Meisel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,2,25]]},"reference":[{"key":"91372_CR1","doi-asserted-by":"publisher","first-page":"163","DOI":"10.1016\/S1474-4422(21)00357-4","volume":"21","author":"MG Huijbers","year":"2022","unstructured":"Huijbers, M. G., Marx, A., Plomp, J. J., Le Panse, R. & Phillips, W. D. Advances in the understanding of disease mechanisms of autoimmune neuromuscular junction disorders. Lancet Neurol. 21, 163\u2013175 (2022).","journal-title":"Lancet Neurol."},{"key":"91372_CR2","doi-asserted-by":"publisher","first-page":"89","DOI":"10.1186\/s12974-022-02448-4","volume":"19","author":"C Nelke","year":"2022","unstructured":"Nelke, C. et al. Independent risk factors for Myasthenic crisis and disease exacerbation in a retrospective cohort of myasthenia gravis patients. J. Neuroinflammation 19, 89 (2022).","journal-title":"J. Neuroinflammation"},{"key":"91372_CR3","doi-asserted-by":"publisher","first-page":"175628641983224","DOI":"10.1177\/1756286419832242","volume":"12","author":"C Schneider-Gold","year":"2019","unstructured":"Schneider-Gold, C., Hagenacker, T., Melzer, N. & Ruck, T. Understanding the burden of refractory myasthenia gravis. Ther. Adv. Neurol. 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Meret Herdick has received speaker\u2019s honaria from argenx and alexion and a honoraria for attending advisory board from alexion. Maike Stein has received speaker\u00b4s honoraria and honoraria for attendance at advisory boards from argenx and Alexion.  Andreas Meisel has received speaker or consultancy honoraria or financial research support (paid to his institution) from Alexion Pharmaceuticals, argenx, Axunio, Destin, Grifols, Hormosan, Pharma, Janssen, Merck, Octapharma, Novartis, Sanofi, UCB, Sand Xcenda. Lars Joeres was a former employee of UCB Pharma and Jutta Biskup is a current employee UCB Pharma. All other authors report no disclosures relevant to the manuscript. Non-financial: Andreas Meisel serves as medical advisory board chairman of the German Myasthenia Gravis Society.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"The study was conducted in accordance to the declaration of Helsinki and received ethics approval by the institutional ethics committee of Charit\u00e9- Universit\u00e4tsmedizin Berlin (EA1\/008\/19) as well as registered on drks.de (DRKS00024527). Due to the non-interventional, retrospective nature of the analyzed data and because our analysis was based on an anonymized dataset, neither ethical review nor informed consent of the patients was required according to German national legislation (\u00a7 75 SGB X).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical statement"}},{"value":"Data (\u201cDMG dataset\u201d) were obtained by a large questionnaire-based survey. No written informed consent was obtained from the study participants because the data collection was completely anonymous (ethics committee of Charit\u00e9 - Universit\u00e4tsmedizin Berlin (EA1\/008\/19)). The study was conducted in accordance to the declaration of Helsinki and received ethics approval by the institutional ethics committee of Charit\u00e9- Universit\u00e4tsmedizin Berlin (EA1\/008\/19) as well as registered on drks.de (DRKS00024527). Due to the non-interventional, retrospective nature of the analyzed data and because our analysis was based on an anonymized dataset, neither ethical review nor informed consent of the patients was required according to German national legislation (\u00a7 75 SGB X).","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"All authors have approved the manuscript for submission, accordingly the manuscript conforms to the journal\u00b4s policies. The authors take full responsibility for the data, the analyses and interpretation, and the conduct of the research. They have full access to all of the data, and the right to publish any and all data separate and apart from the guidance of any sponsor.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}],"article-number":"6687"}}