{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,2]],"date-time":"2026-06-02T02:05:45Z","timestamp":1780365945867,"version":"3.54.1"},"reference-count":0,"publisher":"American Spinal Injury Association","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,6,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Disease-specific registries that record patient data are crucial in supporting research, guiding best practices, and optimizing resource allocation. Since 2004, the Canadian Rick Hansen Spinal Cord Injury Registry (RHSCIR) has collected data from over 10,000 individuals with SCI.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>The primary objective of this study was to identify factors associated with consenting to RHSCIR and reasons for withdrawal to improve registry inclusivity and representativeness in persons with traumatic SCI (TSCI).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>This retrospective cohort study analyzed data from 4090 participants enrolled at RHSCIR acute facilities from 2009 to 2019. Participants were categorized into 3 groups: declined consent (DC), provided full consent (FC), or provided minimal consent and\/or later withdrew consent (MWC). Due to the lack of available data for the DC group, descriptive and multivariable analyses focused on the FC and MWC groups to identify factors associated with full consent.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Of 4090 participants, 2998 (73.3%) were FC, and 856 (20.9%) were MWC. After adjusting for significant differences between the groups, older age and an absence of comorbidities were associated with a decreased likelihood of providing FC. Individuals living in the Atlantic provinces and Ontario showed a higher likelihood of FC than those in the Prairies. The primary reason for withdrawing was a lack of interest.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>This study identifies factors associated with participation and suggests strategies to increase recruitment and inclusivity in RHSCIR. By understanding registry participation, public health policies can be informed, resource allocation optimized, and patient care enhanced for individuals with TSCI.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.46292\/sci25-00037","type":"journal-article","created":{"date-parts":[[2026,6,2]],"date-time":"2026-06-02T01:42:12Z","timestamp":1780364532000},"page":"1-13","source":"Crossref","is-referenced-by-count":0,"title":["Factors Associated With Consent and Opportunities to Increase Participation in the Rick Hansen Spinal Cord Injury Registry: A Population-Based Study"],"prefix":"10.46292","author":[{"given":"Michael","family":"Guidea","sequence":"first","affiliation":[{"name":"Faculty of Medicine, University of Montreal, Montreal, QC, Canada"},{"name":"Integrated University Health and Social Services Centers (H\u00f4pital du Sacr\u00e9-C\u0153ur de Montr\u00e9al), Montreal, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jean-Marc","family":"Mac-Thiong","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Montreal, Montreal, QC, Canada"},{"name":"Integrated University Health and Social Services Centers (H\u00f4pital du Sacr\u00e9-C\u0153ur de Montr\u00e9al), Montreal, QC, Canada"},{"name":"Sainte-Justine University Hospital Research Center, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather A.","family":"Hong","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antoine","family":"Dionne","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Montreal, Montreal, QC, Canada"},{"name":"Integrated University Health and Social Services Centers (H\u00f4pital du Sacr\u00e9-C\u0153ur de Montr\u00e9al), Montreal, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dilnur","family":"Kurban","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jijie","family":"Xu","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"Humphreys","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christiana L.","family":"Cheng","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nader","family":"Fallah","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"},{"name":"Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dorothy","family":"Barthelemy","sequence":"additional","affiliation":[{"name":"\u00c9cole de r\u00e9adaptation, Universit\u00e9 de Montr\u00e9al, Montreal, QC, Canada"},{"name":"Centre de recherche interdisciplinaire en r\u00e9adaptation, Institut universitaire sur la r\u00e9adaptation en d\u00e9ficience physique, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sean D.","family":"Christie","sequence":"additional","affiliation":[{"name":"Department of Surgery (Neurosurgery), Dalhousie University, Halifax, NS, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daryl","family":"Fourney","sequence":"additional","affiliation":[{"name":"Division of Neurosurgery, University of Saskatchewan, Royal University Hospital, Saskatoon, SK, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A. Gary","family":"Linassi","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation, University of Saskatchewan, The Rehabilitation Centre, Saskatoon, SK, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adalberto","family":"Loyola-Sanchez","sequence":"additional","affiliation":[{"name":"Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jerome","family":"Paquet","sequence":"additional","affiliation":[{"name":"CHU de Qu\u00e9bec, Qu\u00e9bec, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vidya A.","family":"Sreenivasan","sequence":"additional","affiliation":[{"name":"The Ottawa Hospital Rehabilitation Centre, Ottawa, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Townson","sequence":"additional","affiliation":[{"name":"Division of Physical Medicine and Rehabilitation, Department of Medicine, University of British Columbia, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eve C.","family":"Tsai","sequence":"additional","affiliation":[{"name":"The Ottawa Hospital, Ottawa Hospital Research Institute, University of Ottawa, Ottawa, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vanessa K.","family":"Noonan","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute, Vancouver, BC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andr\u00e9ane","family":"Richard-Denis","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Montreal, Montreal, QC, Canada"},{"name":"Integrated University Health and Social Services Centers (H\u00f4pital du Sacr\u00e9-C\u0153ur de Montr\u00e9al), Montreal, QC, Canada"},{"name":"\u00c9cole de r\u00e9adaptation, Universit\u00e9 de Montr\u00e9al, Montreal, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"_","family":"_","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"25425","container-title":["Topics in Spinal Cord Injury Rehabilitation"],"original-title":[],"link":[{"URL":"https:\/\/tscir.kglmeridian.com\/view\/journals\/tscr\/aop\/article-10.46292-sci25-00037\/article-10.46292-sci25-00037.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/tscir.kglmeridian.com\/downloadpdf\/journals\/tscr\/aop\/article-10.46292-sci25-00037\/article-10.46292-sci25-00037.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/tscir.kglmeridian.com\/downloadpdf\/journals\/tscr\/aop\/article-10.46292-sci25-00037\/article-10.46292-sci25-00037.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,2]],"date-time":"2026-06-02T01:42:17Z","timestamp":1780364537000},"score":1,"resource":{"primary":{"URL":"https:\/\/tscir.kglmeridian.com\/view\/journals\/tscr\/aop\/article-10.46292-sci25-00037\/article-10.46292-sci25-00037.xml"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,1]]},"references-count":0,"URL":"https:\/\/doi.org\/10.46292\/sci25-00037","relation":{},"ISSN":["1082-0744","1945-5763"],"issn-type":[{"value":"1082-0744","type":"print"},{"value":"1945-5763","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,1]]}}}