The Community Engaged Digital Alzheimer's Research (CEDAR) Study: A Digital Intervention to Increase Research Participation of Black American Participants in the Brain Health Registry.
The Community Engaged Digital Alzheimer's Research (CEDAR) Study: A Digital Intervention to Increase Research Participation of Black American Participants in the Brain Health Registry.
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DOI：
10.14283/jpad.2023.32
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发表时间：
2023
影响因子：
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中科院分区：
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虽然黑人/非洲裔美国老年人在阿尔茨海默病和相关痴呆症的患病率，发病率和结局方面存在显着的不平等，但他们在阿尔茨海默病研究中的地位非常低。社区研究（例如，公平的社区/科学伙伴关系）是一种基于证据的方法，用于改善代表性不足的人群参与阿尔茨海默病研究，但缺乏国家一级的可扩展性。随着来自代表性不足人群的老年人使用互联网的持续增长，基于互联网的研究显示出作为参与和纵向评估的可行，有效方法的希望。社区数字阿尔茨海默氏症研究（CEDAR）研究利用社区参与的研究方法来增加黑人/非洲裔美国成年人在脑健康登记（BHR）和阿尔茨海默氏症临床研究中的参与和研究参与。描述方法并评估CEDAR文化信息数字平台在BHR内的可行性。BHR的所有黑人/非裔美国人参与者都被邀请参加CEDAR，并考虑加入新成立的社区科学伙伴关系委员会，以指导这项研究。社区委员会指导制定了一个文化知情的参与材料和战略，以增加研究参与干部。参与策略包括对完成研究任务的激励，文化上知情的沟通（例如，登陆页面，电子邮件和社交媒体），关于大脑健康的资源，以及CEDAR参与者的视频和书面推荐。BHR，一个基于互联网的登记和队列。自我认同为黑人/非裔美国人的BHR参与者被邀请参加。所有签署在线知情同意书的受试者均入组。我们报告了被邀请、注册、完成任务和自愿加入社区委员会的参与者人数。我们比较了CEDAR参与者和所有被邀请参加研究的人之间的人口统计学，认知特征和基线BHR任务完成率。在3738名受邀者中，349人（9.34%）参加了CEDAR。134人（占CEDAR参与者的37%）自愿加入社区委员会，其中19人被选为社区委员会成员。与受邀者相比，CEDAR队列的女性参与者比例较高（84.5%），而认同属于一个以上民族文化群体的参与者比例较低（21.8%）。与那些没有参加CEDAR的人相比，参加CEDAR的人完成所有BHR任务的参与者比例更高（22%），完成至少一项认知测试的参与者比例更高（76%）。参加CEDAR的参与者中有一名参加研究的伴侣的比例也较高（18%）。一个文化知情的社区研究方法，包括远程召集社区委员会，在网上研究注册的黑人/非洲裔美国人参与是可行的。这种方法可以适用于各种临床研究和其他环境。未来的研究将评估参与战略的有效性。
Although Black/African American older adults bear significant inequities in prevalence, incidence, and outcomes of Alzheimer’s disease and related dementias, they are profoundly under-included in Alzheimer’s Disease research. Community-Engaged Research (e.g., equitable community/science partnerships) is an evidence-based approach for improving engagement of underrepresented populations into Alzheimer’s Disease research, but has lacked scalability to the national level. As internet use among older adults from underrepresented populations continues to grow, internet-based research shows promise as a feasible, valid approach to engagement and longitudinal assessment. The Community Engaged Digital Alzheimer’s Research (CEDAR) study utilizes a community-engaged research approach to increase the engagement and research participation of Black/African American adults in the Brain Health Registry (BHR) and Alzheimer Disease clinical research. To describe the methods and evaluate the feasibility of the CEDAR culturally-informed digital platform within BHR. All Black/African American participants in BHR were invited to enroll in CEDAR and to consider serving on a newly convened Community-Scientific Partnership Board to guide the study. The community board guided the development a culturally-informed cadre of engagement materials and strategies to increase research participation. Engagement strategies included incentives for study task completion, culturally-informed communications (e.g., landing page, emails and social media), resources about brain health, and video and written testimonials by CEDAR participants. BHR, an Internet-based registry and cohort. BHR participants self-identifying as Black/African American were invited to enroll. All participants who signed an online informed consent document were enrolled. We report the number of participants invited, enrolled, completed tasks, and volunteered to join the community board. We compared the demographics, cognitive profile, and baseline BHR task completion rates between CEDAR participants and all those invited to join the study. Of 3738 invited, 349 (9.34%) enrolled in CEDAR. 134 (37% of CEDAR participants) volunteered to join the community board, of which 19 were selected for the community board. Compared to those invited, the CEDAR cohort had a higher percentage of female participants (84.5%) and a lower percentage of participants who identify as belonging to more than one ethnocultural group (21.8%). Compared to those did not enroll in CEDAR, those enrolled in CEDAR had a higher percentage of participants completing all BHR tasks (22%) and a higher percentage of participants completing at least one cognitive test (76%). Those enrolled in CEDAR also had a higher percentage of participants having an enrolled study partner (18%). A culturally-informed Community-Engaged Research approach, including a remotely-convened community board, to engagement of Black/African American participants in an online research registry is feasible. This approach can be adapted for use in various clinical studies and other settings. Future studies will evaluate the effectiveness of the engagement strategies.
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影响因子：
1.6
作者：
Auster, Josephine;Janda, Monika
通讯作者：
Janda, Monika
影响因子：
4
作者：
Bardach, Shoshana H.;Jicha, Gregory A.;Abner, Erin L.
通讯作者：
Abner, Erin L.
影响因子：
1.7
作者：
Cowie, Julie M.;Gurney, Mark E.
通讯作者：
Gurney, Mark E.
DOI：
10.1080/13854046.2015.1029974
发表时间：
2015
期刊：
The Clinical neuropsychologist
影响因子：
--
作者：
Arentoft A;Byrd D;Monzones J;Coulehan K;Fuentes A;Rosario A;Miranda C;Morgello S;Rivera Mindt M
通讯作者：
Rivera Mindt M
DOI：
10.1002/alz.12176
发表时间：
2021-01
期刊：
Alzheimer's & dementia : the journal of the Alzheimer's Association
影响因子：
--
作者：
Avila JF;Rentería MA;Jones RN;Vonk JMJ;Turney I;Sol K;Seblova D;Arias F;Hill-Jarrett T;Levy SA;Meyer O;Racine AM;Tom SE;Melrose RJ;Deters K;Medina LD;Carrión CI;Díaz-Santos M;Byrd DR;Chesebro A;Colon J;Igwe KC;Maas B;Brickman AM;Schupf N;Mayeux R;Manly JJ
通讯作者：
Manly JJ