Background: Participants willing to provide genetic samples are needed to propel research on Alzheimer’s disease (AD) treatment and prevention forward. A limited public understanding of what AD genetic research entails and concerns about participation may constitute recruitment challenges. Objectives: This study seeks to understand how well older adults understand AD genetic research and whether their understanding is related to concerns about participation or willingness to engage. Methods: Our surveys included a mock consent form with corresponding knowledge and opinion questions regarding AD. The surveys were mailed to participants from the University of Kentucky Alzheimer’s Disease Center and to a list of randomly selected individuals within the same age range from a local voter registration list. Descriptive and multivariable linear regression analyses were conducted. Results: The returned surveys (n = 502) demonstrated limits to what the respondents understood immediately after reading the relevant material, with a mean summary knowledge score of 74.5 out of 100. While comprehension gaps were not related to level of concern or willingness to engage, concerns were related to willingness to engage. Concerns were greater among individuals not actively involved in research, individuals from minority groups, and those with higher levels of education. Conclusions: Focusing on concerns specifically, rather than on knowledge more generally, may help increase participation.

中文翻译：

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公众对阿尔茨海默病基因研究的理解和看法

背景：需要愿意提供基因样本的参与者来推动阿尔茨海默病 (AD) 治疗和预防的研究。公众对 AD 基因研究需要什么以及对参与的担忧的有限理解可能构成招聘挑战。目标：本研究旨在了解老年人对 AD 基因研究的理解程度，以及他们的理解是否与参与或参与意愿有关。方法：我们的调查包括模拟同意书，其中包含有关 AD 的相应知识和意见问题。这些调查被邮寄给来自肯塔基大学阿尔茨海默病中心的参与者以及从当地选民登记名单中随机选择的相同年龄范围内的个人名单。进行了描述性和多变量线性回归分析。结果：返回的调查 (n = 502) 表明受访者在阅读相关材料后立即理解的内容有限，平均总结知识得分为 74.5（总分 100）。虽然理解差距与关注程度或参与意愿无关，关注与参与意愿有关。不积极参与研究的个人、少数群体的个人和受教育程度较高的人的担忧更大。结论：特别关注关注点，而不是更普遍的知识，可能有助于提高参与度。平均总结知识得分为 74.5 分（满分 100 分）。虽然理解差距与关注程度或参与意愿无关，但关注点与参与意愿相关。不积极参与研究的个人、少数群体的个人和受教育程度较高的人的担忧更大。结论：特别关注关注点，而不是更普遍的知识，可能有助于提高参与度。平均总结知识得分为 74.5 分（满分 100 分）。虽然理解差距与关注程度或参与意愿无关，但关注点与参与意愿相关。不积极参与研究的个人、少数群体的个人和受教育程度较高的人的担忧更大。结论：特别关注关注点，而不是更普遍的知识，可能有助于提高参与度。