{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,15]],"date-time":"2025-12-15T21:03:44Z","timestamp":1765832624720,"version":"3.48.0"},"reference-count":41,"publisher":"BMJ","issue":"6","license":[{"start":{"date-parts":[[2022,6,1]],"date-time":"2022-06-01T00:00:00Z","timestamp":1654041600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007013","name":"F. Hoffmann-La Roche","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/100007013","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2022,5,16]]},"published-print":{"date-parts":[[2022,6]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Disease-modifying therapies in development for Huntington\u2019s disease (HD) may require specialised administration and additional resource capacity. We sought to understand current and future capacity for HD management in Canada considering the possible introduction of an intrathecal (IT) disease-modifying treatment (DMT).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design, setting and participants<\/jats:title>\n                    <jats:p>Using a case study, mixed methods framework, online surveys followed by semistructured interviews were conducted in late 2020 and early 2021. Neurologists from Canadian HD (n=16) and community (n=11) centres and social workers (n=16) were invited to complete online surveys assessing current HD management and potential capacity to support administration of an IT DMT.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Outcome measures<\/jats:title>\n                    <jats:p>Survey responses, anticipated demand and assumed resource requirements were modelled to reveal capacity to treat (ie, % of eligible patients) by centre. Resource bottlenecks and incremental support required (full-time equivalent, FTE) were also determined.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Neurologists from 15\/16 HD centres and 5\/11 community centres, plus 16\/16 social workers participated. HD centres manage 94% of patients with HD currently seeking care in Canada, however, only 20% of IT DMT-eligible patients are currently seen by neurologists. One-third of centres have no access to nursing support. The average national incremental nursing, room, neurologist and social worker support required to provide IT DMT to all eligible patients is 0.73, 0.36, 0.30 and 0.21 FTE per HD centre, respectively. At peak demand, current capacity would support the treatment of 6% of IT DMT-eligible patients. If frequency of administration is halved, capacity for IT-DMT administration only increases to 11%.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>In Canada, there is little to no capacity to support the administration of an IT DMT for HD. Current inequitable and inadequate resourcing will require solutions that consider regional gaps and patient needs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-062740","type":"journal-article","created":{"date-parts":[[2022,6,1]],"date-time":"2022-06-01T13:21:08Z","timestamp":1654089668000},"page":"e062740","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["Canadian healthcare capacity gaps for disease-modifying treatment in Huntington\u2019s disease: a survey of current practice and modelling of future needs"],"prefix":"10.1136","volume":"12","author":[{"given":"Ang\u00e8le","family":"B\u00e9nard","sequence":"first","affiliation":[{"name":"Huntington Society of Canada, Waterloo, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sylvain","family":"Chouinard","sequence":"additional","affiliation":[{"name":"Department of Medicine, Universit\u00e9 de Montr\u00e9al, Montreal, Quebec, Canada"},{"name":"Unit\u00e9 des troubles du mouvement Andr\u00e9 Barbeau, Centre Hospitalier de l'Universit\u00e9 de Montr\u00e9al, Montreal, Quebec, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Blair R","family":"Leavitt","sequence":"additional","affiliation":[{"name":"Department of Medical Genetics and Department of Medicine, Division of Neurology, University of British Columbia, Vancouver, British Columbia, Canada"},{"name":"Centre for Molecular Medicine and Therapeutics, Vancouver, British Columbia, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9430-4712","authenticated-orcid":false,"given":"Nathalie","family":"Budd","sequence":"additional","affiliation":[{"name":"Hoffmann-La Roche Limited, Mississauga, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer W","family":"Wu","sequence":"additional","affiliation":[{"name":"Hoffmann-La Roche Limited, Mississauga, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kerrie","family":"Schoffer","sequence":"additional","affiliation":[{"name":"Division of Neurology, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia, Canada"},{"name":"Movement Disorder Clinic, QEII Health Sciences Centre Foundation, Halifax, Nova Scotia, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2022,6,1]]},"reference":[{"key":"2025121513010774000_12.6.e062740.1","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2019.00710"},{"key":"2025121513010774000_12.6.e062740.2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.25717"},{"key":"2025121513010774000_12.6.e062740.3","doi-asserted-by":"crossref","first-page":"331","DOI":"10.2217\/nmt-2016-0008","article-title":"The global prevalence of Huntington's disease: a systematic review and discussion","volume":"6","author":"Baig","year":"2016","journal-title":"Neurodegener Dis Manag"},{"key":"2025121513010774000_12.6.e062740.4","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1038\/nrdp.2015.5","article-title":"Huntington disease","volume":"1","author":"Bates","year":"2015","journal-title":"Nat Rev Dis Primers"},{"key":"2025121513010774000_12.6.e062740.5","article-title":"Medication use in Early-HD participants in Track-HD: an investigation of its effects on clinical performance","volume":"8","author":"Keogh","year":"2016","journal-title":"PLoS Curr"},{"key":"2025121513010774000_12.6.e062740.6","first-page":"497","article-title":"Translating Antisense Technology into a Treatment for Huntington\u2019s Disease","volume":"2018","author":"Lane","year":"1780","journal-title":"Methods Mol Biol Clifton NJ"},{"key":"2025121513010774000_12.6.e062740.7","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuron.2019.01.039"},{"key":"2025121513010774000_12.6.e062740.8","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(17)30280-6"},{"key":"2025121513010774000_12.6.e062740.9","doi-asserted-by":"publisher","DOI":"10.1093\/nar\/gkw236"},{"key":"2025121513010774000_12.6.e062740.10","doi-asserted-by":"crossref","first-page":"764","DOI":"10.1001\/jamaneurol.2020.0299","article-title":"Huntingtin-Lowering therapies for Huntington disease: a review of the evidence of potential benefits and risks","volume":"77","author":"Leavitt","year":"2020","journal-title":"JAMA Neurol"},{"key":"2025121513010774000_12.6.e062740.11","doi-asserted-by":"crossref","first-page":"650","DOI":"10.1038\/s41587-021-00955-y","article-title":"Questions swirl around failures of disease-modifying Huntington's drugs","volume":"39","author":"Sheridan","year":"2021","journal-title":"Nat Biotechnol"},{"key":"2025121513010774000_12.6.e062740.12","doi-asserted-by":"publisher","DOI":"10.1016\/j.pharmthera.2014.05.009"},{"key":"2025121513010774000_12.6.e062740.13","unstructured":"Health Canada . 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