Chinese language versions of the National Alzheimer's Coordinating Center's Uniform Data Set version 4: a linguistic and cultural adaptation study

项目摘要 阿尔茨海默病和阿尔茨海默病相关痴呆(AD/ADRD)是最常见的 65岁或以上成年人的精神障碍。年长的华裔美国人有很高的误诊风险或 由于缺乏文化和语言上适当的评估而延误了AD/ADRD的诊断 电池和标准数据。国家阿尔茨海默氏症协调中心(NACC)开发了一种普通话 统一数据集(UDS)测试组版本，用于评估AD/ADRD中的老年华裔美国人 研究。然而，对于这种特定的电池，已经观察到了几个重要的限制。例如， 翻译不包括广东话，广东话和普通话是最常用的语言 在美国仅次于英语和西班牙语。值得注意的是，广东话和普通话有很大的不同 以口头和书面形式相互联系。其次，组成测试项目的测试项目和说明 总体来说，笔译是通过逐字翻译发展起来的，这在文化和语言上并不总是如此 与多样化的老年华裔美国人口相关。此外，缺乏规范的数据会造成 AD/ADRD的准确解释、诊断和预测的障碍。拟议的研究旨在 在飞行员的指导下，开发最小偏差的NACC UDS测试电池的普通话和粤语版本 为当前UDS电池的普通话版本收集的数据(目标1)。该团队还将生成 使用400名认知正常的老年华裔美国人的社会人口学调整的标准化数据(目标2) 在西奈山伊坎医学院阿尔茨海默病研究中心(ISMMS； 加州大学旧金山分校(加州大学旧金山分校；n=200)。最后，研究小组将检查认知能力 表现与通过脑磁共振确定的相应神经解剖区域相关 成像(MRI)(AIM 3)。核磁共振分研究需要300名参与者；100名参与者来自 400名认知正常的参与者已经在AIM 2注册(每个站点：N=50)，另外还有100名 将需要招聘MCI和100个AD/ADRD(每个地点：n=50个MCI和n=50个AD/ADRD)。参与者 必须以普通话/广东话为主，年龄在65岁或以上。所有参赛者都会患上痴呆症 在ADRC使用最新开发的NACC UDS电池的中国版本进行评估。研究的个人资料调查 (Li&Tee)已经成功地在各自的学校招募和评估了会说中文的老年人 ADRC，生成&gt；600名参与者的组合样本。这一群体将为以下人员提供招聘渠道 拟议的研究。PIs还与中国老年人的利益相关者建立了关系 如果招聘成为一项挑战，请社区协助进行招聘。这个新颖的项目将在语言学上提供 以及为未来包括中国老年人在内的跨地域研究提供文化上合适的评估工具 并为NACC研究数据库增加价值。研究结果还将为以下工作提供规范数据 在这一服务不足的人群中检测和诊断认知缺陷，目前还不存在。

Project Summary Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) are one of the most common disorders in adults aged 65 or above. Older Chinese Americans have a high risk of inaccurate diagnosis or delayed diagnosis of AD/ADRD due to the absence of culturally and linguistically appropriate assessment batteries and normative data. The National Alzheimer’s Coordinating Center (NACC) developed a Mandarin version of the Uniform Data Set (UDS) test battery for evaluation of older Chinese Americans in AD/ADRD research. However, several important limitations have been observed for this specific battery. For example, the translations did not include Cantonese, which together with Mandarin, is the most commonly spoken language in the US after English and Spanish. It is important to note that Cantonese and Mandarin are significantly different from one another in both spoken and written forms. Secondly, the test items and instructions that comprise the overall battery were developed through verbatim translations, which are not always culturally and linguistically relevant to the diverse older Chinese American population. Furthermore, a lack of normative data creates barriers to accurate interpretation, diagnosis, and prognostication of AD/ADRD. The proposed study aims to develop minimally biased Mandarin and Cantonese versions of the NACC UDS test battery, guided by the pilot data collected for the Mandarin version of the current UDS battery (Aim 1). The team will also generate sociodemographic-adjusted normative data using 400 older Chinese Americans with normal cognition (Aim 2) at the Alzheimer’s Disease Research Centers (ADRCs) at Icahn School of Medicine at Mount Sinai (ISMMS; n=200) and the University of California, San Francisco (UCSF; n=200). Lastly, the team will examine if cognitive performance correlates with corresponding neuroanatomical regions identified via brain magnetic resonance imaging (MRI) (Aim 3). 300 participants will be required for the MRI sub-study; 100 participants will come from the 400 cognitively normal participants already enrolled in Aim 2 (from each site: n=50), while an additional 100 MCI and 100 AD/ADRD (from each site: n=50 MCI and n=50 AD/ADRD) will need to be recruited. Participants must be primarily Mandarin/Cantonese speaking and aged 65 or above. All enrollees will undergo a dementia evaluation at the ADRCs using the newly developed Chinese versions of the NACC UDS battery. The study PIs (Li & Tee) have been successful in recruiting and evaluating Chinese speaking older adults at their respective ADRCs, generating a combined sample of >600 participants. This cohort will provide a recruitment pipeline for the proposed study. The PIs also have established relationship with stakeholders in the older Chinese communities to assist with recruitment should it become a challenge. This novel project will provide linguistically and culturally appropriate assessment tools for future cross-geographic studies that include older Chinese Americans and add value to the NACC research database. The study results will also provide normative data for the detection and diagnosis of cognitive deficits in this underserved population, which is currently nonexistent.