{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T13:20:49Z","timestamp":1784294449703,"version":"3.55.0"},"reference-count":33,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2019,7,19]],"date-time":"2019-07-19T00:00:00Z","timestamp":1563494400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["1 P30 AG028383"],"award-info":[{"award-number":["1 P30 AG028383"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,5,15]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background and Objectives<\/jats:title>\n                    <jats:p>Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer\u2019s disease. While barriers to participation are well documented, less is known about motivations for Alzheimer\u2019s disease clinical research participation. The purpose of this study was to explore what motivates individuals\u2014who ultimately develop an ongoing connection to research and frequently participate\u2014to engage and stay involved in Alzheimer\u2019s disease research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Research Design and Methods<\/jats:title>\n                    <jats:p>Individuals who had participated in multiple Alzheimer\u2019s disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings<\/jats:title>\n                    <jats:p>Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer\u2019s disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion and Implications<\/jats:title>\n                    <jats:p>These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/geront\/gnz096","type":"journal-article","created":{"date-parts":[[2019,6,20]],"date-time":"2019-06-20T17:34:03Z","timestamp":1561052043000},"page":"693-703","source":"Crossref","is-referenced-by-count":11,"title":["\u201cFrom Victimhood to Warriors\u201d: Super-researchers\u2019 Insights Into Alzheimer\u2019s Disease Clinical Trial Participation Motivations"],"prefix":"10.1093","volume":"60","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1342-5863","authenticated-orcid":false,"given":"Shoshana H","family":"Bardach","sequence":"first","affiliation":[{"name":"Sanders-Brown Center on Aging, University of Kentucky , Lexington"},{"name":"College of Public Health, University of Kentucky , Lexington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelly","family":"Parsons","sequence":"additional","affiliation":[{"name":"Sanders-Brown Center on Aging, University of Kentucky , Lexington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4116-9465","authenticated-orcid":false,"given":"Allison","family":"Gibson","sequence":"additional","affiliation":[{"name":"College of Social Work, University of Kentucky , Lexington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gregory A","family":"Jicha","sequence":"additional","affiliation":[{"name":"Sanders-Brown Center on Aging, University of Kentucky , Lexington"},{"name":"College of Medicine, University of Kentucky , Lexington"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2019,7,19]]},"reference":[{"issue":"3","key":"2026010622571129900_CIT0001","doi-asserted-by":"crossref","first-page":"367","DOI":"10.1016\/j.jalz.2018.02.001","article-title":"2018 Alzheimer\u2019s disease facts and figures","volume":"4","author":"Alzheimer\u2019s Association","year":"2018","journal-title":"Alzheimer\u2019s & Dementia,"},{"key":"2026010622571129900_CIT0002","doi-asserted-by":"crossref","first-page":"580","DOI":"10.1377\/hlthaff.2013.1353","article-title":"Alzheimer\u2019s disease in African Americans: Risk factors and challenges for the future","volume":"33","author":"Barnes","year":"2014","journal-title":"Health Affairs (Project Hope)"},{"key":"2026010622571129900_CIT0003","doi-asserted-by":"crossref","first-page":"119","DOI":"10.3928\/19404921-20180308-01","article-title":"Recruitment of individuals with dementia and their carers for social research: Lessons learned from nine studies","volume":"11","author":"Beattie","year":"2018","journal-title":"Research in Gerontological Nursing"},{"key":"2026010622571129900_CIT0004","doi-asserted-by":"crossref","first-page":"719","DOI":"10.1093\/geront\/gnv683","article-title":"Will my soul go to heaven if they take my brain? 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