Litty Samuel, Katelynn Kuijpers, Erin K. Maloney, Jessica B. Langbaum, Amy Bleakley
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Participants were recruited through paid advertisements, and the focus groups were conducted between September 2022 and 2023 with a sample of 188 adults.</p>\n </section>\n \n <section>\n \n <h3> RESULTS</h3>\n \n <p>There was a general lack of awareness about Alzheimer's disease (AD) research registries. Participants expressed unfamiliarity with the concept of AD research registries, confusion about eligibility criteria and their purpose, and often conflated them with individual clinical trials.</p>\n </section>\n \n <section>\n \n <h3> DISCUSSION</h3>\n \n <p>Research registries can play a crucial role in identifying and referring potential participants to AD prevention studies. Given the lack of understanding about registries, interventions such as messaging with familiar language can help to address lack of awareness and increase enrollment into AD research registries.</p>\n </section>\n \n <section>\n \n <h3> Highlights</h3>\n \n <div>\n <ul>\n \n <li>A better understanding of older adults’ perceptions about research registries.</li>\n \n <li>More relatable and easy-to-comprehend messaging is needed to raise awareness of research registries.</li>\n \n <li>Targeted messaging strategies are needed to recruit participants directly into Alzheimer's disease (AD) clinical trials.</li>\n </ul>\n </div>\n </section>\n </div>","PeriodicalId":53225,"journal":{"name":"Alzheimer''s and Dementia: Translational Research and Clinical Interventions","volume":"11 2","pages":""},"PeriodicalIF":6.8000,"publicationDate":"2025-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/trc2.70111","citationCount":"0","resultStr":"{\"title\":\"What is older adults’ understanding of Alzheimer's disease research registries? Findings from 20 focus group studies\",\"authors\":\"Litty Samuel, Katelynn Kuijpers, Erin K. Maloney, Jessica B. Langbaum, Amy Bleakley\",\"doi\":\"10.1002/trc2.70111\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> INTRODUCTION</h3>\\n \\n <p>Research registries address the challenges associated with enrollment of individuals in research studies by matching members to current studies and trials in need of participants. However, recruitment into research registries can be challenging as many lack awareness regarding research registries and need to be educated on their existence, purpose, and significance.</p>\\n </section>\\n \\n <section>\\n \\n <h3> METHODS</h3>\\n \\n <p>The present study uses data from 20 online focus groups conducted in English with Black (<i>n</i> = 89), White (<i>n</i> = 83), and Hispanic (<i>n</i> = 44) older adults to investigate their understanding of research registries. 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Given the lack of understanding about registries, interventions such as messaging with familiar language can help to address lack of awareness and increase enrollment into AD research registries.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Highlights</h3>\\n \\n <div>\\n <ul>\\n \\n <li>A better understanding of older adults’ perceptions about research registries.</li>\\n \\n <li>More relatable and easy-to-comprehend messaging is needed to raise awareness of research registries.</li>\\n \\n <li>Targeted messaging strategies are needed to recruit participants directly into Alzheimer's disease (AD) clinical trials.</li>\\n </ul>\\n </div>\\n </section>\\n </div>\",\"PeriodicalId\":53225,\"journal\":{\"name\":\"Alzheimer''s and Dementia: Translational Research and Clinical Interventions\",\"volume\":\"11 2\",\"pages\":\"\"},\"PeriodicalIF\":6.8000,\"publicationDate\":\"2025-05-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1002/trc2.70111\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Alzheimer''s and Dementia: Translational Research and Clinical Interventions\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/trc2.70111\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Alzheimer''s and Dementia: Translational Research and Clinical Interventions","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/trc2.70111","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
What is older adults’ understanding of Alzheimer's disease research registries? Findings from 20 focus group studies
INTRODUCTION
Research registries address the challenges associated with enrollment of individuals in research studies by matching members to current studies and trials in need of participants. However, recruitment into research registries can be challenging as many lack awareness regarding research registries and need to be educated on their existence, purpose, and significance.
METHODS
The present study uses data from 20 online focus groups conducted in English with Black (n = 89), White (n = 83), and Hispanic (n = 44) older adults to investigate their understanding of research registries. Participants were recruited through paid advertisements, and the focus groups were conducted between September 2022 and 2023 with a sample of 188 adults.
RESULTS
There was a general lack of awareness about Alzheimer's disease (AD) research registries. Participants expressed unfamiliarity with the concept of AD research registries, confusion about eligibility criteria and their purpose, and often conflated them with individual clinical trials.
DISCUSSION
Research registries can play a crucial role in identifying and referring potential participants to AD prevention studies. Given the lack of understanding about registries, interventions such as messaging with familiar language can help to address lack of awareness and increase enrollment into AD research registries.
Highlights
A better understanding of older adults’ perceptions about research registries.
More relatable and easy-to-comprehend messaging is needed to raise awareness of research registries.
Targeted messaging strategies are needed to recruit participants directly into Alzheimer's disease (AD) clinical trials.
期刊介绍：
Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.
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