Community‐engaged efforts to increase retention of Black American online registry participants
Abstract INTRODUCTION Many longitudinal Alzheimer's disease studies fail to retain Black American adults once enrolled. This limits the generalizability of research findings. METHODS The Community‐Engaged Digital Alzheimer's Research (CEDAR) study developed digital, culturally‐informed, co...
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| Format: | Article |
| Language: | English |
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Wiley
2025-04-01
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| Series: | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
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| Online Access: | https://doi.org/10.1002/trc2.70046 |
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| author | Miriam T. Ashford Anna Aaronson Danqi Zhu Xinyue Deng Sandhya Kannan Catherine Conti Roxanne Alaniz Jennefer Sorce Carole Cypress Derek Flenniken Monica Camacho Juliet Fockler Diana Truran R. Scott Mackin Carl Hill Michael W. Weiner Desiree Byrd Robert W. Turner II Heining Cham Monica Rivera Mindt Rachel L. Nosheny |
| author_facet | Miriam T. Ashford Anna Aaronson Danqi Zhu Xinyue Deng Sandhya Kannan Catherine Conti Roxanne Alaniz Jennefer Sorce Carole Cypress Derek Flenniken Monica Camacho Juliet Fockler Diana Truran R. Scott Mackin Carl Hill Michael W. Weiner Desiree Byrd Robert W. Turner II Heining Cham Monica Rivera Mindt Rachel L. Nosheny |
| author_sort | Miriam T. Ashford |
| collection | DOAJ |
| description | Abstract INTRODUCTION Many longitudinal Alzheimer's disease studies fail to retain Black American adults once enrolled. This limits the generalizability of research findings. METHODS The Community‐Engaged Digital Alzheimer's Research (CEDAR) study developed digital, culturally‐informed, community‐engaged efforts to increase longitudinal registry task completion of Black American Brain Health Registry (BHR) participants. Difference‐in‐differences analysis was conducted to compare longitudinal registry task completion rates within groups (before vs. after CEDAR referral) and between groups (enrolled in CEDAR vs. not enrolled). RESULTS Of 3888 invited Black American BHR participants, 420 (10.8%) enrolled in CEDAR. For CEDAR participants, we found significant increases in enrollment rate into referral studies and BHR timepoint completion rate after enrollment into CEDAR. Compared to those not enrolled, CEDAR participants had higher rates of: enrollment in referral studies, timepoint completion, initial questionnaire completion, and neuropsychological test completion. DISCUSSION The results provide preliminary evidence that CEDAR's culturally‐informed, community‐engaged research efforts were effective at improving engagement of Black American adults in an online longitudinal study. This is evidenced by increased registry engagement before and after enrollment and in comparison to Black American BHR participants not enrolled in CEDAR. These results need to be interpreted cautiously due to selection biases. This strategy can be adapted to other studies and settings. Highlights CEDAR is an online AD/ADRD registry engagement intervention for Black participants. The intervention is community‐engaged, digital, culturally‐informed, and multifaceted. Engagement rates increased before versus during the intervention for enrollees. Engagement rates decreased over the same time period for non‐enrolled participants. Results need to be interpreted with caution due to selection biases. |
| format | Article |
| id | doaj-art-d196a1d2ad894a15a024aa346d60ed3d |
| institution | DOAJ |
| issn | 2352-8737 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | Wiley |
| record_format | Article |
| series | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| spelling | doaj-art-d196a1d2ad894a15a024aa346d60ed3d2025-08-20T03:24:02ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372025-04-01112n/an/a10.1002/trc2.70046Community‐engaged efforts to increase retention of Black American online registry participantsMiriam T. Ashford0Anna Aaronson1Danqi Zhu2Xinyue Deng3Sandhya Kannan4Catherine Conti5Roxanne Alaniz6Jennefer Sorce7Carole Cypress8Derek Flenniken9Monica Camacho10Juliet Fockler11Diana Truran12R. Scott Mackin13Carl Hill14Michael W. Weiner15Desiree Byrd16Robert W. Turner II17Heining Cham18Monica Rivera Mindt19Rachel L. Nosheny20Northern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco USADepartment of Psychology Fordham University Bronx USADepartment of Psychology Fordham University Bronx USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco USANorthern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco USAAlaniz Marketing Novato California USAAlaniz Marketing Novato California USACEDAR Community Scientific Partnership Board San Francisco USANorthern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco USANorthern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco USANorthern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco USAAlzheimer's Association Chicago Illinois USANorthern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco USACUNY Queens College Queens New York USADepartment of Population Health Sciences Duke Aging Center, Duke University School of Medicine Durham North Carolina USADepartment of Psychology Fordham University Bronx USAPsychology, Latin American Latino Studies Institute, & African and African American Studies, Fordham University, Joint Appointment in Neurology Icahn School of Medicine at Mount Sinai New York New York USAVA Advanced Imaging Research Center San Francisco Veteran's Administration Medical Center San Francisco USAAbstract INTRODUCTION Many longitudinal Alzheimer's disease studies fail to retain Black American adults once enrolled. This limits the generalizability of research findings. METHODS The Community‐Engaged Digital Alzheimer's Research (CEDAR) study developed digital, culturally‐informed, community‐engaged efforts to increase longitudinal registry task completion of Black American Brain Health Registry (BHR) participants. Difference‐in‐differences analysis was conducted to compare longitudinal registry task completion rates within groups (before vs. after CEDAR referral) and between groups (enrolled in CEDAR vs. not enrolled). RESULTS Of 3888 invited Black American BHR participants, 420 (10.8%) enrolled in CEDAR. For CEDAR participants, we found significant increases in enrollment rate into referral studies and BHR timepoint completion rate after enrollment into CEDAR. Compared to those not enrolled, CEDAR participants had higher rates of: enrollment in referral studies, timepoint completion, initial questionnaire completion, and neuropsychological test completion. DISCUSSION The results provide preliminary evidence that CEDAR's culturally‐informed, community‐engaged research efforts were effective at improving engagement of Black American adults in an online longitudinal study. This is evidenced by increased registry engagement before and after enrollment and in comparison to Black American BHR participants not enrolled in CEDAR. These results need to be interpreted cautiously due to selection biases. This strategy can be adapted to other studies and settings. Highlights CEDAR is an online AD/ADRD registry engagement intervention for Black participants. The intervention is community‐engaged, digital, culturally‐informed, and multifaceted. Engagement rates increased before versus during the intervention for enrollees. Engagement rates decreased over the same time period for non‐enrolled participants. Results need to be interpreted with caution due to selection biases.https://doi.org/10.1002/trc2.70046Alzheimer's diseaseBlack/African Americanbrain health registrycommunity‐engaged researchdigitaleffectiveness |
| spellingShingle | Miriam T. Ashford Anna Aaronson Danqi Zhu Xinyue Deng Sandhya Kannan Catherine Conti Roxanne Alaniz Jennefer Sorce Carole Cypress Derek Flenniken Monica Camacho Juliet Fockler Diana Truran R. Scott Mackin Carl Hill Michael W. Weiner Desiree Byrd Robert W. Turner II Heining Cham Monica Rivera Mindt Rachel L. Nosheny Community‐engaged efforts to increase retention of Black American online registry participants Alzheimer’s & Dementia: Translational Research & Clinical Interventions Alzheimer's disease Black/African American brain health registry community‐engaged research digital effectiveness |
| title | Community‐engaged efforts to increase retention of Black American online registry participants |
| title_full | Community‐engaged efforts to increase retention of Black American online registry participants |
| title_fullStr | Community‐engaged efforts to increase retention of Black American online registry participants |
| title_full_unstemmed | Community‐engaged efforts to increase retention of Black American online registry participants |
| title_short | Community‐engaged efforts to increase retention of Black American online registry participants |
| title_sort | community engaged efforts to increase retention of black american online registry participants |
| topic | Alzheimer's disease Black/African American brain health registry community‐engaged research digital effectiveness |
| url | https://doi.org/10.1002/trc2.70046 |
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