Integrating Information about Aging Surveys: Novel Integration of Contextual Data to Study Late-Life Cognition and Alzheimer’s Disease and Related Dementia and Dementia Care

摘要 建立资源，使来自高价值、公共资助的队列研究的数据能够广泛获取、(重复)使用、 和可互操作是国家老龄化研究所阿尔茨海默氏症的关键里程碑之一， 相关痴呆症(AD/ADRD)研究实施。全球老龄化数据的门户是一种数据 为协调和传播健康和退休研究及其数据而开发的平台 国际研究网络(HRS-INS)，以促进对47个国家的老龄化的纵向分析。 这个应用程序在一个已经很成功的平台上进行扩展，旨在引入关于晚年生活的新数据 认知和痴呆症，使用协调认知评估议定书(HCAP)收集，以及 来自核心纵向访谈、自我完成问卷、生活史的其他新数据 访谈、临终访谈和特别的新冠肺炎调查，以促进高质量的晚期研究- 生活认知、轻度认知障碍(MCI)和AD/ADRD。我们还将整合上下文数据， 具体地说，空气污染暴露、与长期护理和临终关怀有关的体制和政策措施 关爱，以及关于新冠肺炎大流行的信息。空气污染是AD/ADRD的一个可改变的危险因素 大多数研究来自单个国家，重点是总颗粒物污染。通过重新估计空气 来自不同来源的污染，我们将使感兴趣的研究人员能够调查 暴露对多个国家的认知衰退、MCI和AD/ADRD的影响。类似地， 与痴呆症相关的长期护理的利用率、成本和质量是新出现的令人担忧的领域。因此，我们的目标是 确定在正式、长期、非正式、临终和痴呆症护理方面的机构和政策差异 HRS-INS的受访者。最后，新冠肺炎的流行对老年人来说是毁灭性的 其影响的全部规模尚不清楚。来自HRS-INS的调查数据可以向 损害的程度。随着我们用新的措施扩大我们的数据库并扩大我们的用户基础，我们寻求 重新设计元数据提取、上下文数据集成和数据的技术实现 管理和传播应用。这样的数据基础设施投资是合理的，当数据 被广泛用于产生新的和有意义的新知识和对人口健康的见解，包括 AD/ADRD和痴呆症护理，最终是政策创新。为了方便广泛使用 我们将通过定期组织用户，进一步加强对用户的培训和支持 除了我们定期安排的网络研讨会外，还有会议和研讨会。通过积累这一庞大的 由学科领域专家协调的来自HRS-INS的高质量信息平台，使这些数据 通过向公众开放，并开展外联活动以支持使用这些数据，我们预计网关将 在全球范围内对AD/ADRD的风险、护理和成本产生重大影响的发现。

Abstract Building resources to make data from high value, publicly funded cohort studies widely accessible, (re)usable, and interoperable is one of the National Institute on Aging's key milestones of the Alzheimer's Disease and Related Dementia (AD/ADRD) research implementation. The Gateway to Global Aging Data is a data platform developed to harmonize and disseminate data from the Health and Retirement Study and its international network of studies (HRS-INS) to facilitate longitudinal analyses on aging across 47 countries. Expanding on an already successful platform, this application aims to bring in newly available data on late-life cognition and dementia, collected using the Harmonized Cognitive Assessment Protocol (HCAP), together with other newly available data from core longitudinal interviews, self-completion questionnaire, Life-History interviews, End-of-Life interviews, and the special COVID-19 surveys, to promote high-quality studies of late- life cognition, mild cognitive impairment (MCI), and AD/ADRD. We will also integrate contextual data, specifically, air pollution exposures, institutional and policy measures related to long-term care and end-of-life care, and information about the COVID-19 pandemic. Air pollution is a modifiable risk factor for AD/ADRD yet most research is from individual countries and focused on total particulate pollution. By newly estimating air pollution from different sources at respondent addresses, we will enable interested researchers to investigate the effects of exposures on cognitive decline, MCI, and AD/ADRD, across multiple countries. Similarly, the utilization, cost, and quality of long-term care related to dementia are emerging areas of concern. Thus, we aim to identify institutional and policy differences in formal long-term, informal, end-of-life, and dementia care for the respondents of the HRS-INS. Finally, the COVID-19 pandemic has been devastating to older adults though the full magnitude of its impacts has yet to be understood. Survey data from the HRS-INS can inform the extent of the damage. As we grow our database with new measures and expand our user base, we seek to redesign the technical implementation of our metadata extraction, contextual data integration, and data management and dissemination application. Such investment in data infrastructure is justified when the data are widely used to produce novel and meaningful new knowledge, insights on population health, including AD/ADRD and dementia care, and ultimately policy innovations. To facilitate the widespread use of the Gateway's resources, we will further strengthen user training and support by regularly organizing user conferences and workshops in addition to our regularly scheduled webinars. By amassing this expansive platform of high-quality information from the HRS-INS harmonized by subject-area experts, making these data publically available, and conducting outreach to support use of these data, we anticipate that the Gateway will lead to impactful discoveries on the risks, care, and costs of AD/ADRD globally.