{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T03:13:58Z","timestamp":1782530038963,"version":"3.54.5"},"reference-count":35,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2025,12,4]],"date-time":"2025-12-04T00:00:00Z","timestamp":1764806400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["P30AG072931"],"award-info":[{"award-number":["P30AG072931"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Alzheimer\u2019s Disease"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Participant attrition can compromise the statistical power and generalizability of research results. Prior investigations have shown that perceptions of higher research burden are positively associated with participant withdrawal from longitudinal studies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>We measured participants\u2019 perceived burden in a cohort of older adult research participants enrolled in a longitudinal study of memory and aging at the Michigan Alzheimer's Disease Research Center (MADRC).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Participants completed a modified, 22-item version of the Perceived Research Burden Assessment (PeRBA), which quantitatively measures perceptions of research burden. We performed a multiple linear regression analysis to ascertain the associations between individual participant characteristics (e.g., demographic, clinical, and logistical\/socioecological factors) and ratings of perceived research burden.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      A total of 300 participants completed the PeRBA. Overall burden was relatively low (mean\u2009=\u200936.6, SD\u2009=\u20099.38), with possible scores ranging from 22\u2013110. Participants who self-identified as Black\/African American reported significantly higher levels of perceived research burden relative to participants who self-identified as non-Hispanic White (\n                      <jats:italic toggle=\"yes\">\u03b2<\/jats:italic>\n                      \u2009=\u20096.91,\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009&lt;\u20090.001). Additionally, participants with a dementia diagnosis endorsed significantly higher levels of burden than their cognitively unimpaired counterparts (\n                      <jats:italic toggle=\"yes\">\u03b2<\/jats:italic>\n                      \u2009=\u20094.85,\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009=\u20090.03)\n                      <jats:bold>.<\/jats:bold>\n                      All other independent variables were not significantly associated with burden appraisal (\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009&gt;\u20090.05).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The PeRBA is a useful tool for monitoring participant burden, as well as identifying differential levels of self-reported burden within research cohorts. These findings can inform tailored retention strategies that support the sustained engagement of participants, particularly those who may be the most susceptible to research burden.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/13872877251400787","type":"journal-article","created":{"date-parts":[[2025,12,4]],"date-time":"2025-12-04T14:46:36Z","timestamp":1764859596000},"page":"768-780","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["Experiences of participant burden in an Alzheimer's disease research center longitudinal cohort"],"prefix":"10.1177","volume":"109","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1948-2401","authenticated-orcid":false,"given":"Theresa F","family":"Gierzynski","sequence":"first","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Neurology, School of Medicine, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan M","family":"Reader","sequence":"additional","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Neurology, School of Medicine, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-6234-544X","authenticated-orcid":false,"given":"Bernardo","family":"Flores","sequence":"additional","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Neurology, School of Medicine, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua T","family":"Fox-Fuller","sequence":"additional","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Psychiatry, School of Medicine, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Renee","family":"Gadwa","sequence":"additional","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Neurology, School of Medicine, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arijit","family":"Bhaumik","sequence":"additional","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Neurology, School of Medicine, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Heidebrink","sequence":"additional","affiliation":[{"name":"Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, MI, 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