{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T07:13:53Z","timestamp":1787901233837,"version":"build-2784847793"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T00:00:00Z","timestamp":1696291200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T00:00:00Z","timestamp":1696291200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Euan Macdonald Centre for Motor Neuron Disease Research"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Neurol"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Motor neuron disease (MND) is a rapidly progressive neurodegenerative disorder with limited treatment options. Historically, neurological trials have been plagued by suboptimal recruitment and high rates of attrition. The Motor Neuron Disease\u2013Systematic Multi-Arm Randomised Adaptive Trial (MND\u2013SMART) seeks to identify effective disease modifying drugs. This study investigates person-specific factors affecting recruitment and retention. Improved understanding of these factors may improve trial protocol design, optimise recruitment and retention. Participants with MND completed questionnaires and this was supplemented with clinical data. 12\u00a0months after completing the questionnaires we used MND\u2013SMART recruitment data to establish if members of our cohort engaged with the trial. 120 people with MND completed questionnaires for this study. Mean age at participation was 66 (SD\u2009=\u20099), 14% (<jats:italic>n\u2009=\u2009<\/jats:italic>17) were categorised as long survivors, with 68% (<jats:italic>n\u2009=\u2009<\/jats:italic>81) of participants male and 60% (<jats:italic>n\u2009=\u2009<\/jats:italic>73) had the ALS sub-type. Of the 120 study participants, 50% (<jats:italic>n\u2009=\u2009<\/jats:italic>60) were randomised into MND\u2013SMART and 78% (<jats:italic>n\u2009=\u2009<\/jats:italic>94) expressed interest an in participating. After the 1-year follow-up period 65% (<jats:italic>n\u2009=\u2009<\/jats:italic>39) of the 60 randomised participants remained in MND\u2013SMART. Older age was significantly associated with reduced likelihood of participation (OR\u2009=\u20090.92, 95% CI\u2009=\u20090.88\u20130.96, <jats:italic>p\u2009=\u2009<\/jats:italic>0.000488). The findings show that people with MND are highly motivated to engage in research, but older individuals remain significantly less likely to participate. We recommend the inclusion of studies to explore characteristics of prospective and current participants alongside trials.<\/jats:p>","DOI":"10.1007\/s00415-023-12010-8","type":"journal-article","created":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T12:03:21Z","timestamp":1696334601000},"page":"543-552","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Factors impacting trial participation in people with motor neuron disease"],"prefix":"10.1007","volume":"271","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9843-0778","authenticated-orcid":false,"given":"Emily","family":"Beswick","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Micheala","family":"Johnson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Newton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Dakin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Stenson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon","family":"Abrahams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alan","family":"Carson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siddharthan","family":"Chandran","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4276-639X","authenticated-orcid":false,"given":"Suvankar","family":"Pal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,10,3]]},"reference":[{"issue":"8","key":"12010_CR1","doi-asserted-by":"publisher","first-page":"725","DOI":"10.1212\/01.wnl.0000343008.26874.d1","volume":"72","author":"A Chi\u00f2","year":"2009","unstructured":"Chi\u00f2 A et al (2009) Epidemiology of ALS in Italy: a 10-year prospective population-based study. 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Ethical approval was provided by the West of Scotland Research Ethics Committee 3 (20\/WS\/0067) on 12th May 2020.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical standard"}},{"value":"All participants in this study provided written consent alongside their questionnaires, the consent was obtained according to the Declaration of Helsinki. Ethical approval was provided by the West of Scotland Research Ethics Committee 3 (20\/WS\/0067) on 12th May 2020.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Participant consent"}}]}}