Hebert Luciana E, Kulbacki-Fabisiak Cara, Muller Clemma, Boyd Amanda, O'Leary Marcia, Poole Erin, Ramos Madison, Barker Daniel, Sinclair Ka'imi, Manson Spero M, Buchwald Dedra
Institute for Research and Education to Advance Community Health (IREACH), Washington State University, Spokane, WA, USA.
Missouri Breaks Industries Research, Inc., Eagle Butte, SD, USA.
Ethn Health. 2025 May;30(4):471-490. doi: 10.1080/13557858.2025.2479456. Epub 2025 May 7.
The American Indian and Alaska Native (AI/AN) population is increasing and AI/AN people are living longer than ever before. Although aging-related health issues such as cognitive impairment, dementia, and Alzheimer's disease (AD) are becoming more visible among this population, reliable data on AD prevalence and risk factors among AI/AN people are nearly nonexistent. Concurrently, precision medicine (PM) has demonstrated significant potential for detecting and treating diseases such as AD. For PM to promote health equity for underserved populations, it must not exacerbate existing health disparities and bias in research. There is also little information about preferences among AI/AN people for communicating information regarding AD, PM, or recruitment into clinical trials. Communication barriers and few known facilitators contribute to low rates of AI/AN research participation. This study seeks to address the gaps in AD and PM research among AI/AN communities and promote knowledge of, attitudes towards, and interest and participation in AD-related PM research efforts.
We designed a three-armed RCT to determine the effect of a culturally tailored brochure and video compared to non-tailored recruitment materials. Participants were recruited in Rapid City, South Dakota and were required to meet the following eligibility criteria: 1) identify as AI/AN; 2) be able to speak, read, and understand English; 3) be aged 40 or older; and 4) have the cognitive and decisional capacity to consent and sign and date the informed consent document.
We enrolled 914 in the RCT and 812 have been randomized to a study condition. The mean age is 54 years (standard deviation = 10.3 years); 62% are female. Overall, 22% reported a parent, grandparent or sibling have been diagnosed with AD, and 22% reported a family member with an other type of dementia. One quarter (25%) of participants reported having an undiagnosed memory problem themselves, and 22% reported having a family member with undiagnosed memory problems. Of randomized participants, 743 (72%) enrolled in the research registry.
This study will inform future recruitment efforts for ADRD-focused clinical trials. Enrollment of AI/AN participants in an Alzheimer's Disease-Precision Medicine (AD-PM) Registry will provide opportunity for future research on this topic in partnership with this population.
美国印第安人和阿拉斯加原住民（AI/AN）人口正在增加，且他们的寿命比以往任何时候都更长。尽管认知障碍、痴呆症和阿尔茨海默病（AD）等与衰老相关的健康问题在这一人群中越来越明显，但关于AI/AN人群中AD患病率和风险因素的可靠数据几乎不存在。与此同时，精准医学（PM）在检测和治疗AD等疾病方面已显示出巨大潜力。为使精准医学促进服务不足人群的健康公平，它绝不能加剧现有的健康差距和研究中的偏见。关于AI/AN人群在交流AD、PM或参与临床试验招募信息方面的偏好也知之甚少。沟通障碍和少数已知的促进因素导致AI/AN人群参与研究的比例较低。本研究旨在填补AI/AN社区在AD和PM研究方面的空白，并促进对AD相关PM研究工作的了解、态度以及兴趣和参与。
我们设计了一项三臂随机对照试验，以确定与非定制招募材料相比，文化定制宣传册和视频的效果。参与者在南达科他州拉皮德城招募，需符合以下纳入标准：1）认定为AI/AN；2）能够说、读和理解英语；3）年龄在40岁及以上；4）具有同意签署知情同意文件并注明日期的认知和决策能力。
我们在随机对照试验中招募了914人，其中812人已随机分配到研究组。平均年龄为54岁（标准差 = 10.3岁）；62%为女性。总体而言,22%的人报告其父母、祖父母或兄弟姐妹被诊断患有AD，22%的人报告有家庭成员患有其他类型的痴呆症。四分之一（25%）的参与者报告自己有未确诊的记忆问题，22%的人报告有家庭成员存在未确诊的记忆问题。在随机分组的参与者中，743人（72%）加入了研究登记册。
本研究将为未来以ADRD为重点的临床试验的招募工作提供参考。AI/AN参与者加入阿尔茨海默病精准医学（AD-PM）登记册将为未来与该人群合作开展这一主题的研究提供机会。
