{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T15:06:09Z","timestamp":1787497569011,"version":"build-2736575974"},"reference-count":27,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2024,1,9]],"date-time":"2024-01-09T00:00:00Z","timestamp":1704758400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Neuromuscular Diseases"],"published-print":{"date-parts":[[2024,3,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Duchenne Muscular Dystrophy (DMD) is a progressive genetic disease with a prevalence of 1 per 3,600\u20136,000 male births. Individuals with DMD are typically diagnosed at age 4\u20137 years; median survival is 30 years. They require multidisciplinary care, personal assistance, and often special education.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>The aim was to assess the burden of disease in DMD in Denmark. This includes incidence, prevalence, use of healthcare services, labour market participation, educational outcomes, and overall attributable costs due to DMD. Impact on the closest relatives (siblings and parents) was also investigated.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>The comprehensive Danish national health and administrative registers were used to assess the burden of disease following individuals with DMD and closest relatives from five years before, and up to 20 years after DMD diagnosis. Individuals with DMD (and relatives) from 1994\u20132021 were included. All outcomes were compared to matched control groups without the disease drawn from the Danish population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>213 unique individuals with DMD were identified. They had lower grades in school, required more special education and more healthcare and home care compared to their control group. The extra costs of special education summed to EUR 180,900 over the course of 11 years elementary school. They had an annual average productivity loss of EUR 20,200 between the age of 18 to 30. The extra healthcare costs of DMD in the 20 years after diagnosis were estimated to EUR 1,524,000. If an individual with DMD lives to be 30, total extra costs sum to EUR 2,365,800.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Using national register data this study presented detailed results on the burden of disease of DMD, including impact on closest relatives. With 60 additional hospital admissions and 200 extra outpatient contacts in 20 years healthcare costs, but also costs of home care and special education, increases as disease progresses.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3233\/jnd-230133","type":"journal-article","created":{"date-parts":[[2024,1,12]],"date-time":"2024-01-12T12:26:38Z","timestamp":1705062398000},"page":"443-457","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":16,"title":["Burden of Disease of Duchenne Muscular Dystrophy in Denmark \u2013 A National Register-Based Study of Individuals with Duchenne Muscular Dystrophy and their Closest Relatives"],"prefix":"10.1177","volume":"11","author":[{"given":"Jan H\u00e5kon","family":"Rudolfsen","sequence":"first","affiliation":[{"name":"EY, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Vissing","sequence":"additional","affiliation":[{"name":"Copenhagen Neuromuscular Center, Copenhagen University Hospital, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulla","family":"Werlauff","sequence":"additional","affiliation":[{"name":"The Danish Rehabilitation Centre for Neuromuscular Diseases, Aarhus, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Olesen","sequence":"additional","affiliation":[{"name":"Center for Rare Diseases and Neuropediatric Department, Aarhus University Hospital, Aarhus, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niels","family":"Illum","sequence":"additional","affiliation":[{"name":"H. C. Andersen Children\u2019s Hospital, Odense University Hospital, Odense, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jens","family":"Olsen","sequence":"additional","affiliation":[{"name":"EY, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter Bo","family":"Poulsen","sequence":"additional","affiliation":[{"name":"Health & Value, Pfizer Denmark, Ballerup, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mette","family":"Strand","sequence":"additional","affiliation":[{"name":"Medical Affairs, Pfizer Denmark, Ballerup, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alfred Peter","family":"Born","sequence":"additional","affiliation":[{"name":"Department of Child- and Adolescent Medicine, Copenhagen University Hospital, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,1,9]]},"reference":[{"key":"ref001","doi-asserted-by":"publisher","DOI":"10.1002\/ana.23528"},{"key":"ref002","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2012.301"},{"key":"ref003","unstructured":"Duchenne muscular dystrophy: about the disease[Internet]. 2021 [cited 2022 Nov 9]. Available from:https:\/\/rarediseases.info.nih.gov\/diseases\/6291\/duchennemuscular-dystrophy."},{"key":"ref004","unstructured":"Duchennes muskeldystrofi (DMD) [Internet]. RCFM.[cited 2022 Nov 9]. Available from:https:\/\/rcfm.dk\/diagnose\/duchenns-muskeldystrofi-dmd\/."},{"key":"ref005","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-0858"},{"key":"ref006","doi-asserted-by":"publisher","DOI":"10.1007\/s10654-020-00613-8"},{"key":"ref007","unstructured":"Orphanet: Duchenne muscular dystrophy [Internet].[cited 2022 Nov 9]. Available from:https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Search.php?lng=EN&data_id=13913&Disease_Disease_Search_diseaseGro."},{"key":"ref008","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000012910"},{"key":"ref009","doi-asserted-by":"publisher","DOI":"10.1177\/23333936221094858"},{"key":"ref010","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-021-00248-3"},{"key":"ref011","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-017-0631-3"},{"key":"ref012","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13934"},{"key":"ref013","doi-asserted-by":"publisher","DOI":"10.1177\/1403494811401482"},{"key":"ref014","doi-asserted-by":"publisher","DOI":"10.1080\/14034940701271882"},{"key":"ref015","doi-asserted-by":"publisher","DOI":"10.2147\/CLEP.S341480"},{"key":"ref016","unstructured":"PRIS112: Consumer price index (2015=100) by main figures [Internet]. Statistics Denmark; 2023 Jan. Available from:https:\/\/www.statbank.dk\/statbank5a\/selectvarval\/de-fine.asp?PLanguage=1&subword=tabsel&MainTable=PR-IS112&PXSId=194807&tablestyle=&ST=SD&buttons=0."},{"key":"ref017","unstructured":"S\u00e5 meget koster en skoleelev: kommunernes enhedsudgifter p\u00e5skoleomr\u00e5det 2009\/2010-2012\/2013.2015."},{"key":"ref018","unstructured":"Medicinsk teknologivurdering af respiratorbehandling i eget hjem. 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