Alzheimer's disease biomarker disclosure in African Americans and Whites – Personal and programmatic consequences of knowing ATN status

非裔美国人和白人中阿尔茨海默病生物标志物的披露 — 了解 ATN 状态的个人和规划后果

• 批准号: 9895618
• 负责人: Lindsay Renee Clark
• 金额: $ 7.75万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-01 至 2021-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9895618
• 关键词: Adult; Affect; African American; Age; Alzheimer disease prevention; Alzheimer' s Disease; Alzheimer' s disease diagnosis; Alzheimer' s disease risk; Alzheimer' s disease therapy; Alzheimer’s disease biomarker; Amyloid; Amyloid beta-Protein; Anxiety; Behavior; Belief; Biological Markers; Cerebrospinal Fluid; Clinical; Clinical Trials; Cognitive; Control Locus; Data; Dementia; Development; Diagnosis; Disclosure; Disease; Education; Effectiveness; Enrollment; Ensure; Ethics; Family history of; Future; Genetic Markers; Goals; Health; Health Promotion; Incidence; Individual; Knowledge; Left; Link; Longitudinal cohort study; Measures; Medical Research; Nerve Degeneration; Neurofibrillary Tangles; Outcome; Pathologic; Population; Population Heterogeneity; Predictive Factor; Prevalence; Prevention trial; Procedures; Registries; Research; Risk; Senile Plaques; Social support; Surveys; Symptoms; Telephone; Testing; Time; Trust; Underrepresented Groups; Wisconsin; base; clinical center; clinical trial enrollment; cohort; dementia risk; disparity reduction; experience; health care availability; minimal risk; neuroimaging; outcome forecast; outcome prediction; pre-clinical; programs; psychologic; psychological distress; racial disparity; recruit; research study; risk minimization; social norm; social stigma; tau Proteins; willingness

PROJECT SUMMARY The ability to detect biological markers of Alzheimer's disease (AD), including beta-amyloid plaques and neurofibrillary tangles, using neuroimaging and spinal fluid procedures has shifted research towards symptom prevention and trials of disease-modifying therapies during the preclinical stage. Although AD is evolving from a clinical to a biomarker-based diagnosis characterized by amyloid, tau, and neurodegeneration (“ATN”), the psychological consequences of using this framework with cognitively unimpaired adults from diverse backgrounds remains unknown. Furthermore, few studies exist on AD biomarkers in African Americans, despite the increased prevalence and incidence of AD in this population. There is a critical need to understand how adults traditionally under-represented in research, such as African Americans, perceive AD biomarker-detected pathologic changes and to identify factors linked to positive (e.g., health-promoting behaviors that may reduce dementia risk) and negative (e.g., stigma and psychological distress) outcomes related to biomarker disclosure. In the absence of such knowledge, it will be difficult to develop ethical and culturally-sensitive biomarker disclosure approaches that minimize risk for negative psychological consequences. This gap, if left unaddressed, may contribute to continued difficulty recruiting and retaining African Americans into biomarker research, affecting the generalizability of those studies. The objective of this proposal is to identify personal/demographic, experiential, and AD-specific factors associated with willingness to enroll in biomarker research and subsequent likelihood for negative and positive outcomes related to disclosure. Results will be used to inform a future R01 application focused on developing and implementing ethical approaches for communicating biomarker information to a diverse population in a manner that minimizes stigma and psychological distress, empowers individuals to engage in health-promoting behaviors, and encourages enrollment and retention in AD-related research and clinical trials. This study proposes to conduct telephone-based surveys with cognitively unimpaired African Americans (n=150) and whites (n=150) enrolled in two longitudinal cohort studies, the Wisconsin Registry for Alzheimer's Prevention and the Wisconsin Alzheimer's Disease Research Center. Our specific aims are to (1) identify factors that predict willingness to enroll in research measuring and disclosing AD biomarker data and (2) identify factors linked to negative and positive outcomes related to biomarker disclosure. Upon completion of these aims, our expected outcomes are to have identified factors associated with the decision to seek or avoid personal biomarker-disclosing research and the likelihood to experience negative or positive outcomes. This in turn is targeted to provide greater inclusivity of African Americans and other marginalized groups to participate in AD biomarker research. Research shifting the diagnosis and treatment of AD to biological markers without inclusion of these groups risks continued racial disparities in AD research, resulting in lower effectiveness in developing AD therapies that successfully generalize to the whole population.

项目总结 检测阿尔茨海默病(AD)生物标志物的能力，包括β-淀粉样斑块和 神经原纤维缠结，使用神经成像和脊髓液程序，已经将研究转向症状 临床前阶段疾病修正疗法的预防和试验。尽管AD正在从一个 临床上以淀粉样蛋白、tau蛋白和神经变性为特征的基于生物标记物的诊断， 使用这一框架对来自不同地区的认知正常成年人的心理后果 背景仍不清楚。此外，关于非裔美国人AD生物标记物的研究很少，尽管 阿尔茨海默病在该人群中的患病率和发病率增加。迫切需要了解如何 在研究中传统上代表不足的成年人，如非裔美国人，感知检测到的AD生物标记物 病理变化并确定与积极因素有关的因素(例如，可能减少的促进健康的行为 与生物标记物披露相关的风险)和负面结果(例如，耻辱和心理困扰)。 在缺乏这些知识的情况下，开发伦理和文化敏感的生物标记物将是困难的。 将负面心理后果的风险降至最低的披露方法。这一差距，如果不加以解决， 可能会继续难以招募和留住非洲裔美国人参与生物标记物研究， 影响这些研究的概括性。这项建议的目标是确定个人/人口统计， 与参加生物标记物研究和后续研究的意愿相关的经验性因素和AD特定因素 与披露相关的负面和正面结果的可能性。结果将用于通知未来的R01 应用侧重于开发和实施传播生物标志物的伦理方法 以最大限度地减少耻辱和心理痛苦的方式向不同人群提供信息，使 鼓励个人从事健康促进行为，并鼓励注册和保留AD相关专业 研究和临床试验。这项研究建议对认知正常的人进行基于电话的调查 非裔美国人(n=150)和白人(n=150)参加了两项纵向队列研究，威斯康星州注册中心 为阿尔茨海默氏症预防和威斯康星州阿尔茨海默氏症研究中心。我们的具体目标是 (1)确定预测参与研究意愿的因素，测量和披露AD生物标记物数据，并 (2)确定与生物标记物披露相关的消极和积极结果相关的因素。在完成后 这些目标，我们的预期结果是已经确定了与寻求或避免决定相关的因素 个人生物标记物披露研究和经历负面或正面结果的可能性。此入站 TURN的目标是为非洲裔美国人和其他边缘群体提供更大的包容性来参与 在AD生物标记物研究中。阿尔茨海默病的诊断和治疗转向无生物标志物的研究 纳入这些群体有可能在AD研究中继续存在种族差异，导致在 开发成功推广到整个人群的AD疗法。

项目成果

The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research.

• DOI: 10.1002/trc2.12416
• 发表时间: 2023-07
• 期刊: ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS
• 影响因子: 4.8
• 作者: Ketchum, Fred B;Chin, Nathaniel A;Erickson, Claire;Lambrou, Nickolas H;Basche, Kristin;Gleason, Carey E;Clark, Lindsay
• 通讯作者: Clark, Lindsay