{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T04:21:03Z","timestamp":1791865263922,"version":"4.3.4"},"reference-count":10,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2016,7,27]],"date-time":"2016-07-27T00:00:00Z","timestamp":1469577600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"National Institute for Health and Social Care Research"},{"name":"Wales Assembly Government through Health and Care Research Wales","award":["NIHR FS 2012 - Busse-Morris"],"award-info":[{"award-number":["NIHR FS 2012 - Busse-Morris"]}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Euro J of Neurology"],"published-print":{"date-parts":[[2016,10]]},"abstract":"<jats:sec><jats:title>Background and purpose<\/jats:title><jats:p>Approximately 9000 people in the UK are affected by Huntington's disease (HD). People with HD require ongoing health and social care support. There is a knowledge gap about costs of health and social care use associated with HD in the UK. This paper estimates the economic cost in the UK.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Data on UK patients for the year 2013 were extracted from the European Huntington's Disease Network REGISTRY study, a full clinical dataset, including the full medical history and medication history for patients with HD. National unit costs for the price year 2013 were applied to health and social care services.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Data were available for 131 people. The mean annual cost per person with HD was \u00a321 605. The largest proportion of this cost (65%) was due to informal care (\u00a314 085).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Informal care was the largest driver of costs across all stages of HD; thus there is a need to also consider the needs of carers when planning services for people with HD.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ene.13107","type":"journal-article","created":{"date-parts":[[2016,7,27]],"date-time":"2016-07-27T09:17:01Z","timestamp":1469611021000},"page":"1588-1590","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":45,"title":["The societal cost of Huntington's disease: are we underestimating the burden?"],"prefix":"10.1111","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6159-1842","authenticated-orcid":false,"given":"C.","family":"Jones","sequence":"first","affiliation":[{"name":"Centre for Health Economics and Medicines Evaluation Bangor University Bangor UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Busse","sequence":"additional","affiliation":[{"name":"South East Wales Trials Unit Cardiff University Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.","family":"Quinn","sequence":"additional","affiliation":[{"name":"School of Healthcare Sciences Cardiff University Cardiff UK"},{"name":"Department of Biobehavioral Sciences Columbia University New York NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Dawes","sequence":"additional","affiliation":[{"name":"Oxford Institute of Nursing and Allied Health Research Oxford Brookes University Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C.","family":"Drew","sequence":"additional","affiliation":[{"name":"South East Wales Trials Unit Cardiff University Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Kelson","sequence":"additional","affiliation":[{"name":"South East Wales Trials Unit Cardiff University Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Hood","sequence":"additional","affiliation":[{"name":"South East Wales Trials Unit Cardiff University Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Rosser","sequence":"additional","affiliation":[{"name":"Cardiff Brain Repair Group Schools of Medicine and Biosciences Cardiff University Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R. T.","family":"Edwards","sequence":"additional","affiliation":[{"name":"Centre for Health Economics and Medicines Evaluation Bangor University Bangor UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,7,27]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2012-304636"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.17925\/ENR.2013.08.01.6"},{"key":"e_1_2_7_4_1","volume-title":"Dementia 2010: The Economic Burden of Dementia and Associated Research Funding in the United Kingdom","author":"Luengo\u2010Fernandez R","year":"2010"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1371\/currents.RRN1206"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.3111\/13696998.2013.818545"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1371\/currents.RRN1184"},{"key":"e_1_2_7_8_1","volume-title":"Unit Costs of Health and Social Care","author":"Curtis L","year":"2013"},{"key":"e_1_2_7_9_1","unstructured":"Department of Health.NHS Reference Costs 2012\u201313.http:\/\/data.gov.uk\/publisher\/nhs-reference-costs-2012-to-2013(accessed 06\/08\/2015)"},{"key":"e_1_2_7_10_1","unstructured":"National Health Service: Prescription Cost Analysis \u2212 England 2013.http:\/\/www.hscic.gov.uk\/catalogue\/PUB13887(accessed 25\/08\/2015)"},{"key":"e_1_2_7_11_1","unstructured":"PrinceM KnappM GuerchetM et al.Dementia UK: Update. 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