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

国家阿尔茨海默病协调中心统一数据集第4版中文版：语言和文化适应研究

• 批准号: 10740587
• 负责人: Clara Li
• 金额: $ 128.68万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-15 至 2028-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10740587
• 关键词: Adult; Alzheimer' s Disease; Alzheimer' s disease diagnosis; Alzheimer' s disease related dementia; Assessment tool; California; Chinese; Chinese American; Clinical assessments; Cognition; Cognitive; Cognitive deficits; Communities; Data; Data Set; Databases; Dementia; Detection; Development; Diagnosis; Disease; Educational Status; Elderly; Enrollment; Evaluation; Funding; Future; Geography; Goals; Health; Individual; Instruction; Language; Linguistics; Magnetic Resonance Imaging; Minority Health Research; Neuroanatomy; Neuropsychology; Not Hispanic or Latino; Participant; Population; Psychometrics; Publishing; Records; Reporting; Research; Risk; Sampling; San Francisco; Scientist; Site; Standardization; Testing; Translations; Underrepresented Populations; Underserved Population; Universities; Update; Work; Writing; aged; bilingualism; brain magnetic resonance imaging; cognitive performance; cohort; cost; diagnostic accuracy; equity, diversity, and inclusion; ethnic minority; health equity; high risk; improved; medical schools; multidisciplinary; neural correlate; neuroimaging; neuromechanism; novel; outreach program; prognostication; programs; racial minority; recruit; sociodemographics; treatment disparity

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.

项目摘要 阿尔茨海默氏病和阿尔茨海默氏病有关的痴呆症（AD/ADRD）是最常见的 65岁或更高的成年人的疾病。年长的华裔美国人的诊断不正确或 由于缺乏文化和语言上适当的评估，AD/ADRD的诊断延迟 电池和普通数据。国家阿尔茨海默氏症协调中心（NACC）开发了普通话 统一数据集（UDS）测试电池的版本，用于评估广告/ADRD中的中国美国人 研究。但是，对于此特定电池，已经观察到了一些重要的局限性。例如， 翻译不包括粤语，它与普通话一起是最常见的语言 在美国，英语和西班牙语。重要的是要注意，广东话和普通话显着不同 在口语和书面形式中彼此之间。其次，完成的测试项目和说明 整体电池是通过逐字化的翻译开发的，这些翻译并不总是在文化和语言上 与分散的中国美国人人口有关。此外，缺乏正常数据会产生 准确解释，诊断和AD/ADRD提示的障碍。拟议的研究旨在 在飞行员的指导下，开发最小有偏见的普通话和广东话版本的NACC UDS测试电池 为当前UDS电池的普通话版本收集的数据（AIM 1）。团队还将产生 社会人口统计学调整的正常数据使用正常认知正常的中国美国人（AIM 2） 在西奈山伊坎医学院的阿尔茨海默氏病研究中心（ADRC）（ISMMS； n = 200）和加利福尼亚大学旧金山大学（UCSF; n = 200）。最后，团队将检查是否认知 性能与通过大脑磁共振确定的相应神经解剖区域相关 成像（MRI）（目标3）。 MRI子研究需要300名参与者； 100名参与者将来自 已经参加了AIM 2的400名认知正常参与者（每个站点：n = 50），而另外100个 MCI和100 AD/ADRD（来自每个站点：N = 50 MCI和N = 50 AD/ADRD）需要招募。参与者 必须是主要的普通话/粤语，并年龄在65岁或更高。所有注册都会患有痴呆症 使用新开发的NACC UDS电池的中文版本进行ADRC进行评估。研究pis （Li＆Tee）已经成功地招募和评估了各自的中文老年人 ADRC，生成> 600名参与者的组合样本。该队列将为 拟议的研究。 PI还与老年中国人的利益相关者建立了关系 如果成为挑战，社区可以协助招聘。这个小说项目将以语言提供 以及文化上适当的评估工具，用于未来的跨地理研究，其中包括较老的中文 美国人并为NACC研究数据库增加价值。研究结果还将提供正常数据 在服务不足的人群中的认知缺陷的检测和诊断，目前不存在。