Developing and Evaluating a Surveillance System for Alzheimer's Dementia In the United States

项目总结/摘要 阿尔茨海默病和相关痴呆症（ADRD）影响多达570万美国人， 美国到2040年，经济将达到每年3790亿至5000亿美元。2020年国家计划更新目标5 为了解决阿尔茨海默病问题，“改善数据以跟踪进展”，认识到需要加强对阿尔茨海默病的监测 ADRD。该目标指出，“数据和监测工作对于跟踪ADRD的负担至关重要. 帮助了解人口之间的健康差距，如种族和少数民族，低， 收入人口、农村居民以及性和性别少数群体。“没有数据或监视系统 目前，ADRD监测。然而，医疗保险和医疗补助数据提供了一个有希望的来源， 用于跟踪ADRD诊断的信息。医疗保险覆盖了65岁以上的大多数美国人，医疗补助覆盖了65岁以上的大多数美国人。 涵盖ADRD患者的长期护理服务。2016年，数据基础设施委员会 国家老龄化研究所（NIA）确定了“减少研究人员在以下方面面临的重大障碍的方法： 使用医疗保健索赔和遭遇数据”作为NIA的主要目标，强调了 医疗保险和医疗补助数据的价值。我们建议建立一个公开访问的系统，以（1）跟踪ADRD 医疗保险和医疗补助中的诊断;（2）进行研究，以了解诊断之间的相关性 和评估痴呆症;（3）通过使用其数据来评估 重要的研究问题。在目标1中，我们建议利用现有的合作伙伴， 开发一个公众可访问的系统来监测和监督医疗保险中的ADRD诊断的方法 和医疗补助，提供国家，州和县一级的信息，并按年龄，性别，种族/民族， 共患病率、合格性等特征和分层因素。医疗索赔不能确定所有 老年痴呆症患者，因此需要进行更多的研究，以了解支付中的偏见 索赔信息。在目标2中，我们将评估医疗保险索赔在识别人员方面的预测能力 使用来自医疗保险和全国代表性健康和健康的相关数据评估痴呆症， 退休研究（HRS）。目标2将评估医疗保险索赔检测HRS的敏感性和特异性 评估痴呆症并探索社会人口统计学，健康和认知因素的差异。最后在 目标3，我们建议使用新的监测平台进行实证分析;估计发病率 在医疗保险中诊断为ADRD的患者中，COVID-19死亡率。一旦完成，我们 描述将提供一个急需的ADRD监测系统，极大地扩大访问和 为研究界和公众了解Medicare和Medicaid ADRD信息。

PROJECT SUMMARY/ABSTRACT Alzheimer's disease and related dementias (ADRD) affect as many as 5.7 million Americans and will cost the U.S. economy between $379 and $500 billion per year by 2040. Goal 5 of the 2020 update to the National Plan to Address Alzheimer's, "Improve data to track progress", recognizes the need for increased surveillance of ADRD. The goal states, "Data and surveillance efforts are paramount to tracking the burden of ADRD … and assist with understanding health disparities among populations such as racial and ethnic minorities, low- income populations, rural residents, and sexual and gender minorities." No data or surveillance system currently exists for ADRD surveillance. However, Medicare and Medicaid data offer a promising source of information to track ADRD diagnoses. Medicare covers most Americans over the age of 65, and Medicaid covers long-term care services for people with ADRD. In 2016, the Data Infrastructure Committee of the National Institute on Aging (NIA) identified "ways to reduce the significant obstacles faced by researchers in using medical care claims and encounter data" as a primary NIA objective, highlighting the importance and value of Medicare and Medicaid data. We propose to create a publicly accessible system to (1) track ADRD diagnoses in Medicare and Medicaid; (2) conduct research to understand the correlation between diagnosed and assessed dementia; and (3) demonstrate the value of the new system by using its data to evaluate an important research question. In Aim 1, we propose to leverage an established set of partners and methodologies to develop a publicly accessible system to monitor and surveil ADRD diagnoses in Medicare and Medicaid, providing information at the national, state and county level and by age, sex, race/ethnicity, comorbidity, eligibility and other characteristics and stratification factors. Medical claims do not identify all persons living with dementia, so additional research is needed to understand the biases embedded in payment claims information. In Aim 2, we will evaluate the predictive power of Medicare claims in identifying persons with assessed dementia using linked data from Medicare and the nationally representative Health and Retirement Study (HRS). Aim 2 will estimate the sensitivity and specificity of Medicare claims in detecting HRS assessed dementia and explore differences across sociodemographic, health, and cognitive factors. Finally, in Aim 3, we propose to use the new surveillance platform to perform a demonstration analysis; estimating rates of COVID-19 mortality among patients diagnosed with ADRD in Medicare. When completed, the system we describe will provide a much-needed ADRD surveillance system, vastly expanding access to and understanding of Medicare and Medicaid ADRD information for the research community and general public.