{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T11:18:56Z","timestamp":1787570336080,"version":"build-2736575974"},"reference-count":24,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Consortium of MS Centers","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}]},{"DOI":"10.13039\/100000090","name":"Congressionally Directed Medical Research Programs","doi-asserted-by":"publisher","award":["HT9425-24-1-0985"],"award-info":[{"award-number":["HT9425-24-1-0985"]}],"id":[{"id":"10.13039\/100000090","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Multiple Sclerosis Journal \u2013 Experimental, Translational and Clinical"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:sec>\n                    <jats:title>Background and Objectives<\/jats:title>\n                    <jats:p>We aimed to assess the feasibility and acceptability of self-collected saliva for genetics from participants of a registry and determine whether responses to hypothetical questions regarding sharing of genetic information reflected observed behaviors.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a cross-sectional study collecting saliva for a genetic study in the North American Research Committee on MS (NARCOMS) registry. We linked participants to a prior survey for a subset of participants with responses, to examine factors associated with concordance between consent status and hypothetical willingness to share genetic information using logistic regression.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of \u223c6200 participants contacted, 1227 expressed interest in the genetic study, 763 consented (62.2% of interested, \u223c10% of those contacted) and most returned saliva samples (&gt;80% of those consented). We found low agreement between the genetic study response and willingness to link genetic data (adjusted kappa\u2009=\u20090.186, standard error\u2009=\u20090.029). Multivariable regression identified no factors significantly associated with concordance between consent status and hypothetical willingness to share genetic information, though findings may reflect limited power.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Among participants who expressed interest, most were willing to provide saliva for genetics studies, though hypothetical sharing of genetic information did not reflect actual behaviors, and overall participation represented a minority of those contacted.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/20552173261467203","type":"journal-article","created":{"date-parts":[[2026,8,21]],"date-time":"2026-08-21T14:58:41Z","timestamp":1787324321000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Assessing the feasibility, theoretical interest, and observed behaviors of adding genetic data to a patient-reported multiple sclerosis registry"],"prefix":"10.1177","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3928-9879","authenticated-orcid":false,"given":"Kaarina","family":"Kowalec","sequence":"first","affiliation":[{"name":"College of Pharmacy, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada"},{"name":"Department of Medical Epidemiology &amp; Biostatistics, Karolinska Institutet, Solna, Sweden"},{"name":"Department of Biochemistry &amp; Medical Genetics, Max Rady College of Medicine Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Douglas","family":"Menendez","sequence":"additional","affiliation":[{"name":"Department of Neurology, UT Southwestern, Dallas, TX, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8455-980X","authenticated-orcid":false,"given":"Gary","family":"Cutter","sequence":"additional","affiliation":[{"name":"Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4263-3717","authenticated-orcid":false,"given":"Robert J","family":"Fox","sequence":"additional","affiliation":[{"name":"Mellen Multiple Sclerosis Center, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1855-5595","authenticated-orcid":false,"given":"Ruth Ann","family":"Marrie","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada"},{"name":"Department of Medicine, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada"},{"name":"Nova Scotia Health, Halifax, NS, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1088-110X","authenticated-orcid":false,"given":"Amber","family":"Salter","sequence":"additional","affiliation":[{"name":"Department of Neurology, UT Southwestern, Dallas, TX, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,8,21]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.7224\/1537-2073.2020-133"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000269"},{"key":"e_1_3_3_4_2","first-page":"451","article-title":"Comparisons of latinos, African Americans, and caucasians with multiple sclerosis","volume":"20","author":"Buchanan RJ","year":"2010","unstructured":"Buchanan RJ, Zuniga MA, Carrillo-Zuniga G, et al. 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