Collaborative Center for Health Equity, Institute for Clinical and Translational Research, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.
School of Nursing, University of Wisconsin, Madison, WI, USA.
J Alzheimers Dis. 2023;95(2):663-675. doi: 10.3233/JAD-230275.
Although African Americans experience the highest risk of Alzheimer's disease (AD), they are dramatically underrepresented in preclinical biomarker research. This is especially true for studies involving lumbar puncture as it may involve more perceived risk even for those participants who are otherwise supportive of research.
To understand the unique concerns of African American participants regarding biomarker studies involving lumbar puncture who demonstrate support for AD research.
Study participants were African American adults contacted through an AD research registry. We employed a novel method used to create hypothetical research studies varying on a set number of factors. The method is designed to collect potential patterns in decision making regarding research participation but differs from experimental vignette design in that the survey is administered with an accompanying qualitive interview to determine the meaning participants ascribe to factors independently and in conjunction with one another.
Sixty-one participants each reviewed three randomly selected research scenarios and created their "ideal" study involving lumbar puncture. Scenario variables included: disclosure of research results, racial and ethnic identity of the researcher, recruitment method, and amount of incentive.
Findings indicate that transparency in the return of AD research results to be the strongest driver of participation, followed by race of the researcher and amount of incentive. Recruitment method had limited impact on hypothetical decision making.
尽管非裔美国人患阿尔茨海默病（AD）的风险最高，但他们在临床前生物标志物研究中代表性严重不足。对于涉及腰椎穿刺的研究来说尤其如此，因为即使对于那些原本支持研究的参与者来说，这也可能涉及更多的感知风险。
了解对 AD 研究表示支持，但对涉及腰椎穿刺的生物标志物研究有特殊顾虑的非裔美国参与者的独特关注点。
通过 AD 研究登记册联系非裔美国成年人作为研究参与者。我们采用了一种新的方法来创建假设的研究，这些研究在一组因素上有所不同。该方法旨在收集有关研究参与决策的潜在模式，但与实验情境设计不同，因为该调查是在伴随定性访谈的情况下进行的，以确定参与者各自以及共同赋予因素的含义。
61 名参与者每人都审查了三个随机选择的研究场景，并创建了他们理想的涉及腰椎穿刺的研究。情景变量包括：研究结果的披露、研究人员的种族和民族身份、招募方法和激励金额。
研究结果表明，向参与者返还 AD 研究结果的透明度是参与的最强驱动力，其次是研究人员的种族和激励金额。招募方法对假设决策的影响有限。
