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，使高价值的数据，公共资助的队列研究广泛访问，（可重复）使用， 和可互操作性是国家老龄化研究所的阿尔茨海默病的关键里程碑之一， 相关痴呆症（AD/ADRD）研究实施。全球老龄化数据门户是一个数据库， 该平台旨在协调和传播健康与退休研究及其 国际研究网络（HRS-INS），以促进对47个国家的老龄化问题进行纵向分析。 在一个已经成功的平台上扩展，该应用程序旨在引入新的老年数据 认知和痴呆，使用统一认知评估方案（HCAP）收集，以及 其他新获得的数据来自核心纵向访谈、自我完成问卷、生活史 访谈，临终访谈，以及特殊的COVID-19调查，以促进高质量的研究后期- 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， 具体而言，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 护理和有关COVID-19大流行的信息。空气污染是AD/ADRD的一个可改变的风险因素 大多数研究来自个别国家，并侧重于总的颗粒污染。通过新估算的空气 我们会让有兴趣的研究人员进行调查， 在多个国家中暴露对认知下降、MCI和AD/ADRD的影响。同样， 与痴呆症有关的长期护理的利用率、成本和质量是新出现的令人关切的领域。因此，我们旨在 确定正规长期、非正规、临终和痴呆症护理的制度和政策差异， HRS-INS的受访者。最后，尽管COVID-19大流行对老年人造成了毁灭性的打击， 其影响的全面程度尚待了解。来自HRS-INS的调查数据可以为 损害的程度。随着我们采用新的措施扩大数据库并扩大用户群，我们寻求 重新设计我们的元数据提取、上下文数据集成和数据 管理和传播应用。在数据基础设施方面的这种投资是合理的， 被广泛用于产生关于人口健康的新颖和有意义的新知识， AD/ADRD和痴呆症护理，最终是政策创新。为了促进广泛使用 我们将进一步加强用户培训和支持，定期组织用户 除了我们定期安排的网络研讨会之外，我们还举办会议和研讨会。通过积累这种广阔的 由主题领域专家统一的HRS-INS高质量信息平台，使这些数据 我们预计，如果能够获得这些数据，并进行推广以支持这些数据的使用， 导致全球AD/ADRD风险、护理和成本的有影响力的发现。

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.