Precision Brain Health Monitoring for Alzheimer's Disease Risk Detection in the Framingham Study: Black & AA Recruitment Supplement

弗雷明汉研究中用于阿尔茨海默病风险检测的精确大脑健康监测：黑人

• 批准号: 10786286
• 负责人: Rhoda Au
• 金额: $ 25.18万
• 依托单位: BOSTON UNIVERSITY MEDICAL CAMPUS
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10786286
• 关键词: Affect; Alzheimer' s disease related dementia; Alzheimer' s disease risk; Black American; Black race; Cognitive; Communities; Country; Data; Data Collection; Data Set; Detection; Feedback; Fostering; Government; Learning; Massachusetts; Monitor; Not Hispanic or Latino; Parents; Participant; Population; Procedures; Protocols documentation; Research; Scientist; Trust; Work; brain health; cohort; community engagement; design; digital; digital assessment; effectiveness evaluation; interest; member; recruit; success

Project Summary This supplement seeks to explore alternative approaches to the recruitment and retention of Black American participants in AD/ADRD research utilizing digital assessments. Black Americans are underrepresented in the FHS cohort, which is predominantly non-Hispanic White. Participants who self- identify as Black represent only 1.7% of the FHS cohort, whereas they comprise 5.2% of Middlesex Country, which includes the town of Framingham and surrounding communities; this is lower than what is found within the state of Massachusetts where, the Black Americans comprise 9.3% of the total population. AD/ADRD affects Black Americans at higher rates than non-Hispanic Whites, which makes it essential that they be included in research, but recruitment efforts are limited in their success. One widely described factor making recruitment of Black Americans challenging is the lack of trust in scientific research subsequent to the historical abuse of this population by the U.S. government and scientists, and so we are centering the fostering of trust in our approach. We intend to work with two experts in Black community engagement to facilitate our efforts. Our first aim involves making connections with local Black leaders to have discussions about the needs of the community and how we can contribute to the needs so we might foster trust and collaboratively design an effective recruitment/retention protocol. The second aim is to implement and evaluate this newly developed recruitment/retention protocol by soliciting feedback from community members for whom the protocol was successful (increased interest in learning about the research) as well as from those for whom the protocol did not foster interest in engagement. We will revise the protocol based on this feedback, employ the revised procedures, and re-evaluate. The third aim is to ask those who expressed interest in learning more about our research to evaluate the digital data collection protocol and give feedback on which parts they would, and which they would not, be willing to do. They will then be invited to participate in our digital data collection study to increase representation of Black Americans. We anticipate collecting digital data from between 119-314 Black American participants.

项目摘要 本补编旨在探索招募和留住黑人的替代方法 美国参与者利用数字评估进行AD/ADRD研究。美国黑人是 在FHS队列中代表性不足，主要是非西班牙裔白人。参与者自我- 被确认为黑人的人只占FHS队列的1.7%，而他们占米德尔塞克斯的5.2% 乡村，包括Framingham镇和周围社区；这比 发现在马萨诸塞州，美国黑人占总人口的9.3%。 AD/ADRD对美国黑人的影响比非西班牙裔白人更高，这使得 他们被纳入研究，但招聘努力在他们的成功方面是有限的。一个被广泛描述的因素 使招募美国黑人具有挑战性的是对科学研究缺乏信任 美国政府和科学家对这一群体的历史虐待，所以我们正在关注 培养对我们方法的信任。我们打算与黑人社区参与方面的两名专家合作 为我们的努力提供便利。我们的首要目标是与当地黑人领袖建立联系，进行讨论 关于社区的需求，以及我们如何为这些需求做出贡献，以便我们可以建立信任和 协作设计有效的招聘/保留方案。第二个目标是实施和 通过向社区征求反馈意见来评估这一新开发的招聘/保留协议 方案成功的成员(对了解研究的兴趣增加) 对于那些议定书没有培养参与兴趣的人来说。我们将根据以下情况修改协议 根据这一反馈，采用修订后的程序，并重新评估。第三个目标是询问那些 表示有兴趣更多地了解我们的研究，以评估数字数据收集协议和 反馈哪些部分他们愿意做，哪些不愿意做。到那时，他们将成为 邀请参加我们的数字数据收集研究，以增加美国黑人的代表性。我们 预计收集119-314名美国黑人参与者的数字数据。

项目成果

Redefining and Validating Digital Biomarkers as Fluid, Dynamic Multi-Dimensional Digital Signal Patterns.

• DOI: 10.3389/fdgth.2021.751629
• 发表时间: 2021
• 期刊: Frontiers in digital health
• 作者: Au R;Kolachalama VB;Paschalidis IC
• 通讯作者: Paschalidis IC

Alzheimer's disease amyloid-β pathology in the lens of the eye.

• DOI: 10.1016/j.exer.2022.108974
• 发表时间: 2022-08
• 期刊: EXPERIMENTAL EYE RESEARCH
• 影响因子: 3.4
• 作者: Moncaster, Juliet A.;Moir, Robert D.;Burton, Mark A.;Chadwick, Oliver;Minaeva, Olga;Alvarez, Victor E.;Ericsson, Maria;Clark, John I.;McKee, Ann C.;Tanzi, Rudolph E.;Goldstein, Lee E.
• 通讯作者: Goldstein, Lee E.

Digital phenotyping: An equal opportunity approach to reducing disparities in Alzheimer's disease and related dementia research.

• DOI: 10.1002/dad2.12495
• 发表时间: 2023-10
• 期刊: Alzheimer's & dementia (Amsterdam, Netherlands)