{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T16:57:14Z","timestamp":1792083434996,"version":"4.4.0"},"reference-count":30,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2024,7,31]],"date-time":"2024-07-31T00:00:00Z","timestamp":1722384000000},"content-version":"vor","delay-in-days":30,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["T32\u00a0AG00096"],"award-info":[{"award-number":["T32\u00a0AG00096"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["P30\u00a0AG016573"],"award-info":[{"award-number":["P30\u00a0AG016573"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["P30\u00a0AG066519"],"award-info":[{"award-number":["P30\u00a0AG066519"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R01\u00a0AG077628"],"award-info":[{"award-number":["R01\u00a0AG077628"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000060","name":"National Institute of Allergy and Infectious Diseases","doi-asserted-by":"publisher","award":["5R25AI170491\u201002"],"award-info":[{"award-number":["5R25AI170491\u201002"]}],"id":[{"id":"10.13039\/100000060","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["alz-journals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["A&D Transl Res & Clin Interv"],"published-print":{"date-parts":[[2024,7]]},"abstract":"Abstract<\/jats:title>\n \n INTRODUCTION<\/jats:title>\n Recruitment challenges in people with and without Down syndrome (DS) can delay research progress and risk sample bias. This study identified and quantified differences in research attitudes across populations of research enrollment decision\u2010makers for individuals with and without DS.<\/jats:p>\n <\/jats:sec>\n \n METHODS<\/jats:title>\n \n We performed analyses using data from two registries: the University of California, Irvine Consent\u2010to\u2010Contact (C2C) Registry and DS\u2010Connect. The former represented a sample of non\u2010DS decision\u2010makers (\n N<\/jats:italic>\n = 4818), while for the latter, we excluded individuals with DS, leaving a population of DS family decision\u2010makers (\n N<\/jats:italic>\n = 976). We assessed scores on the Research Attitudes Questionnaire (RAQ) between DS and non\u2010DS decision\u2010makers. We compared total RAQ scores using linear regression and assessed item\u2010level RAQ differences using proportional odds regression.\n <\/jats:p>\n <\/jats:sec>\n \n RESULTS<\/jats:title>\n \n Mean total RAQ scores were not statistically different between decision\u2010makers in the two registries, after adjusting for age, sex, race and ethnicity, education, and the coronavirus disease 2019 (COVID\u201019) time frame (Est. Diff = 0.11, 95% confidence interval [CI]: \u20100.22, 0.43\u037e\n p<\/jats:italic>\n = 0.531). However, in a pre\u2010specified analysis, we did find evidence of differential attitudes on item\u2010level RAQ scores. Specifically, decision\u2010makers for participants with DS had increased odds of a more favorable response to the question of responsibility to help others (DS vs. non\u2010DS: odds ratio [OR] = 1.26, 95% CI: 1.08, 1.48) and decreased odds of a more favorable response to the question regarding the belief that medical research would find cures for major diseases during their lifetime (DS vs. non\u2010DS: OR = 0.77, 95% CI: 0.66, 0.90).\n <\/jats:p>\n <\/jats:sec>\n \n DISCUSSION<\/jats:title>\n Our findings provide insights for researchers to develop strategies for recruiting individuals with and without DS into clinical research. The observed item\u2010level differences warrant further investigation to instruct precise recruitment strategies.<\/jats:p>\n <\/jats:sec>\n \n Highlights<\/jats:title>\n \n \n \n Research attitudes between decision\u2010makers for individuals with Down syndrome (DS) and decision\u2010makers without DS were observed to be similar on average.<\/jats:p>\n <\/jats:list-item>\n \n Item\u2010level differences in research attitudes were observed to differ for DS and non\u2010DS decision\u2010makers.<\/jats:p>\n <\/jats:list-item>\n \n These results can help facilitate precise recruitment strategies for populations with DS.<\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1002\/trc2.12478","type":"journal-article","created":{"date-parts":[[2024,7,31]],"date-time":"2024-07-31T07:30:45Z","timestamp":1722411045000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Comparing research attitudes in Down syndrome and non\u2010Down syndrome research decision\u2010makers"],"prefix":"10.1002","volume":"10","author":[{"given":"Thuy V.","family":"Lu","sequence":"first","affiliation":[{"name":"Department of Statistics University of California, Irvine Irvine California USA"},{"name":"Institute for Memory Impairments and Neurological Disorders University of California, Irvine Irvine California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paola","family":"Campos","sequence":"additional","affiliation":[{"name":"Department of Mathematics California State University, Stanislaus Turlock California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sean","family":"Leader","sequence":"additional","affiliation":[{"name":"Department of Statistics Cal Poly, San Luis Obispo San Luis Obispo California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xavier","family":"Lee","sequence":"additional","affiliation":[{"name":"Department of Statistics University of Washington Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helena","family":"Xu","sequence":"additional","affiliation":[{"name":"Department of Statistics and Data Science University of California Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric","family":"Doran","sequence":"additional","affiliation":[{"name":"Institute for Memory Impairments and Neurological Disorders University of California, Irvine Irvine California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua D","family":"Grill","sequence":"additional","affiliation":[{"name":"Institute for Memory Impairments and Neurological Disorders University of California, Irvine Irvine California USA"},{"name":"Department of Neurobiology and Behavior University of California Irvine California USA"},{"name":"Department of Psychiatry and Human Behavior University of California Irvine California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ira T.","family":"Lott","sequence":"additional","affiliation":[{"name":"Institute for Memory Impairments and Neurological Disorders University of California, Irvine Irvine California USA"},{"name":"School of Medicine University of California Irvine California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,7,31]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2013.1314"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2013.06.013"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0074\u20107750(10)39004\u20105"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572\u2010019\u20100143\u20107"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(21)00245\u20103"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.12112"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2023.22924"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1525\/jer.2011.6.1.63"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.3390\/cancers15133409"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1740774520982315"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/trc2.12023"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neurobiolaging.2015.11.007"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13195\u2010022\u201001120\u20106"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.3233\/JAD\u2010180069"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.gheart.2015.04.001"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.2307\/1912934"},{"issue":"2","key":"e_1_2_8_18_1","first-page":"65","article-title":"A 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