{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,12]],"date-time":"2026-09-12T01:19:25Z","timestamp":1789175965175,"version":"build-2803163510"},"reference-count":23,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2025,12,19]],"date-time":"2025-12-19T00:00:00Z","timestamp":1766102400000},"content-version":"vor","delay-in-days":18,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,12,1]],"date-time":"2025-12-01T00:00:00Z","timestamp":1764547200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["U01AG051406"],"award-info":[{"award-number":["U01AG051406"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["U01AG051412"],"award-info":[{"award-number":["U01AG051412"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["alz-journals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Alzheimer's &amp;amp; Dementia"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>INTRODUCTION<\/jats:title>\n                    <jats:p>Over 220,000 people live with Down syndrome (DS) in the United States, with an average life expectancy of 63.5 years of age. The high risk for Alzheimer's disease (AD) in DS means studies must be accessible and inclusive. We share our experience of building a collaborative group of self\u2010advocates and care partners to provide meaningful feedback on research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS<\/jats:title>\n                    <jats:p>Our research partnership group is supported by the Alzheimer's Clinical Trials Consortium\u2014Down Syndrome (ACTC\u2010DS) and Alzheimer's Biomarker Consortium Down Syndrome (ABC\u2010DS). We synthesize feedback into themes and recommendations for researchers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>Feedback themes are broad, extending from the strong motivation to engage in research to the need to balance study burden and risk. Recommendations for researchers include providing support and connection to resources, sharing individual and study\u2010level results, flexibility, and respectful communication.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>DISCUSSION<\/jats:title>\n                    <jats:p>Our collaborative approach will lead to more relevant and accessible research studies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Highlights<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>Inclusive and accessible research is needed for Down syndrome and Alzheimer's disease.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>We built a collaborative group of self\u2010advocates and care partners to provide feedback.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Feedback includes a strong motivation to learn about brain health and engage in research.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Respectful communication includes representative images and tailored materials.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Recommendations include the choice to learn individual results, flexibility, and support.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/alz.70999","type":"journal-article","created":{"date-parts":[[2025,12,19]],"date-time":"2025-12-19T11:30:46Z","timestamp":1766143846000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["\u201cBeing brave, being seen, and having your voice heard\u201d: Perspectives of self\u2010advocates and families toward accessible and impactful research of Alzheimer's disease in down syndrome"],"prefix":"10.1002","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7849-8553","authenticated-orcid":false,"given":"Sarah","family":"Walter","sequence":"first","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute University of Southern California  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lauren","family":"Ptomey","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine The University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Head","sequence":"additional","affiliation":[{"name":"Department of Pathology &amp; Laboratory Medicine, and Neurology School of Medicine University of California, Irvine  Irvine California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann","family":"Cohen","sequence":"additional","affiliation":[{"name":"Alzheimer's Disease Research Center University Of Pittsburgh School of Medicine  Pittsburgh Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joseph Mike","family":"Briones","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henry","family":"Shaw","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brandon","family":"Carter","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Kishner","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Willie","family":"Pestolesi","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anthony","family":"Sciullo","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katy Kolb","family":"Olmstead","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aurelia","family":"Carter","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sara","family":"Kishner","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy Kolb","family":"Tucker","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lissa","family":"Pestolesi","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Briones","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dana","family":"Sciullo","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kay","family":"Sciullo","sequence":"additional","affiliation":[{"name":"Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California 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