Rachel Nosheny, 4150 Clement Street, 114M, San Francisco, CA. 94121, USA, Telephone: 415-221-4810, Email address:
J Prev Alzheimers Dis. 2023;10(4):847-856. doi: 10.14283/jpad.2023.32.
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.
尽管黑人和非裔美国老年人在阿尔茨海默病和相关痴呆症的患病率、发病率和结果方面存在显著的不平等，但他们在阿尔茨海默病研究中却严重缺乏代表性。社区参与式研究（例如，公平的社区/科学伙伴关系）是一种基于证据的方法，可以提高代表性不足的人群参与阿尔茨海默病研究的积极性，但在全国范围内缺乏可扩展性。随着代表性不足的老年人群体中互联网的使用不断增加，基于互联网的研究作为一种可行的、有效的参与和纵向评估方法显示出了前景。社区参与式数字阿尔茨海默病研究（CEDAR）研究利用社区参与式研究方法，提高黑人和非裔美国成年人在大脑健康登记处（BHR）和阿尔茨海默病临床研究中的参与度和研究参与度。
描述 CEDAR 文化知情数字平台在 BHR 中的方法和评估其可行性。
所有在 BHR 中自我认定为黑人和非裔美国人的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，以指导研究。社区委员会指导制定了一个文化知情的参与人员骨干和策略，以增加研究参与度。参与策略包括完成研究任务的奖励、文化知情的沟通（例如，登录页面、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证言。
BHR，一个基于互联网的登记处和队列。
被邀请参加 BHR 的自我认定为黑人和非裔美国人的参与者。所有签署在线知情同意书的参与者都被招募。
我们报告了受邀者的数量、参与者的数量、完成任务的数量和自愿加入社区委员会的数量。我们比较了 CEDAR 参与者和所有受邀参加研究的参与者的人口统计学、认知特征和基线 BHR 任务完成率。
在 3738 名受邀者中，有 349 名（9.34%）参加了 CEDAR。134 名（CEDAR 参与者的 37%）自愿加入社区委员会，其中 19 名被选入社区委员会。与受邀者相比，CEDAR 队列中的女性参与者比例更高（84.5%），而自我认定属于多个族裔群体的参与者比例更低（21.8%）。与那些没有参加 CEDAR 的参与者相比，参加 CEDAR 的参与者完成所有 BHR 任务的比例更高（22%），完成至少一项认知测试的比例更高（76%）。参加 CEDAR 的参与者也有更高比例的参与者有注册的研究伙伴（18%）。
一种文化知情的社区参与式研究方法，包括远程召集的社区委员会，以促进黑人和非裔美国参与者参与在线研究登记处是可行的。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策略的有效性。
