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 阿尔茨海默病和阿尔茨海默病相关性痴呆（AD/ADRD）是最常见的痴呆之一， 65岁或以上的成年人的疾病。老年华裔美国人有很高的风险不准确的诊断或 由于缺乏适当的文化和语言评估，AD/ADRD诊断延迟 电池和标准数据。国家老年痴呆症协调中心（NACC）开发了一种普通话 统一数据集（UDS）测试组合的版本，用于评估AD/ADRD中的老年华裔美国人 research.然而，对于这种特定的电池，观察到了几个重要的局限性。比如说 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，广东话和普通话有明显的不同 以书面和口头的形式互相交流。第二，组成测试项目的测试项目和说明 通过逐字翻译制作了整套材料，但逐字翻译在文化和语言上并不总是符合 与不同年龄的华裔美国人有关。此外，由于缺乏规范性数据， AD/ADRD的准确解释、诊断和验证的障碍。拟议的研究旨在 在飞行员的指导下，开发最小偏差的普通话和粤语版本的NACC UDS测试组合 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统计学调整的规范性数据（目标2） 在西奈山伊坎医学院的阿尔茨海默病研究中心（ADRC）（ISMMS; n = 200）和加州大学旧金山分校（UCSF; n = 200）。最后，团队将检查认知能力是否 性能与通过脑磁共振识别的相应神经解剖区域相关 磁共振成像（MRI）（目的3）。MRI子研究将需要300名受试者; 100名受试者将来自 400名认知正常的参与者已经参加了目标2（来自每个站点：n = 50），而另外100名参与者 需要招募MCI和100例AD/ADRD（每个研究中心：n = 50例MCI和n = 50例AD/ADRD）。参与者 必须主要讲普通话/广东话，并年满65岁。所有的参与者都将经历痴呆症 使用新开发的中文版NACC UDS组合在ADRC进行评估。研究PI (Li& Tee）已经成功地招募和评估了他们各自的中文老年人， ADRC，产生> 600名参与者的组合样本。这批人员将为以下人员提供招聘渠道： 建议的研究。PI还与中国老年人的利益相关者建立了关系 如果招募工作成为一项挑战，社区将提供协助。这个新的项目将提供语言上的 和文化上合适的评估工具，用于未来包括中国老年人在内的跨地域研究 美国人和增加价值的NACC研究数据库。研究结果还将为以下方面提供规范性数据： 检测和诊断这一服务不足人群的认知缺陷，目前尚不存在。