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

整合老龄化调查信息：以新颖的方式整合情境数据来研究晚年认知、阿尔茨海默病以及相关痴呆症和痴呆症护理

• 批准号: 10812026
• 负责人: Sara Adar
• 金额: $ 221.28万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-05-01 至 2027-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10812026
• 关键词: Acceleration; Address; Aging; Air Pollution; Alzheimer' s disease related dementia; Alzheimer' s disease risk; Area; Brazil; COVID-19; COVID-19 pandemic; Caring; Characteristics; Chile; Code; Cognition; Cohort Studies; Collaborations; Communities; Country; Data; Data Set; Databases; Dementia; Economics; Educational process of instructing; Educational workshop; Elderly; Elements; Environmental Risk Factor; Family; Fostering; Funding; Goals; Growth; Health; Health Status; Health and Retirement Study; Impaired cognition; Individual; Infrastructure; Institution; International; Interview; Investments; Knowledge; Long-Term Care; Long-Term Effects; Longitudinal Surveys; Measures; Metadata; Mission; Names; National Institute on Aging; Particulate; Personal Satisfaction; Policies; Pollution; Population; Process; Protocols documentation; Publications; Questionnaires; Research; Research Personnel; Resources; Respondent; Retirement; Risk; Sampling; Schedule; Source; Speed; Standardization; Surveys; Time; Training; base; cognitive testing; cost; data dissemination; data infrastructure; data integration; data management; data resource; dementia care; dementia risk; design; end of life; end of life care; experience; health data; improved; innovation; insight; interest; interoperability; life history; longitudinal analysis; mild cognitive impairment; modifiable risk; novel; outreach; population health; psychosocial; research and development; symposium; usability; webinar

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.

抽象的 建立资源，使高价值、公共资助的队列研究的数据能够广泛获取、（重复）使用、 和可互操作性是国家老龄化研究所在阿尔茨海默氏病和 相关痴呆症 (AD/ADRD) 研究实施。全球老龄化数据的门户是数据 开发平台是为了协调和传播健康与退休研究及其研究的数据 国际研究网络 (HRS-INS)，旨在促进 47 个国家的老龄化纵向分析。 该应用程序在一个已经成功的平台上进行扩展，旨在引入有关晚年的新可用数据 认知和痴呆症，使用协调认知评估协议（HCAP）收集，以及 来自核心纵向访谈、自我完成问卷、生活史的其他新可用数据 访谈、临终访谈和特别的 COVID-19 调查，以促进晚期患者的高质量研究 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， 具体而言，空气污染暴露、与长期护理和临终相关的制度和政策措施 护理以及有关 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 大多数研究来自各个国家，重点关注总颗粒物污染。通过重新估计空气 受访者地址有不同来源的污染，我们将让感兴趣的研究人员进行调查 多个国家的暴露对认知能力下降、MCI 和 AD/ADRD 的影响。同样， 与痴呆症相关的长期护理的利用、成本和质量是新出现的令人关注的领域。因此，我们的目标是 确定正式长期护理、非正式护理、临终关怀和痴呆症护理方面的制度和政策差异 HRS-INS 的受访者。最后，尽管新冠肺炎 (COVID-19) 大流行对老年人造成了毁灭性打击 其影响的全部规模尚待了解。 HRS-INS 的调查数据可以告知 损坏的程度。随着我们通过新措施扩大数据库并扩大用户群，我们力求 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。当数据 被广泛用于产生新颖且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，以及最终的政策创新。为了便于广泛使用 Gateway的资源，我们将通过定期组织用户进一步加强用户培训和支持 除了我们定期安排的网络研讨会之外，还举办会议和研讨会。通过积累这一广阔的 HRS-INS 的高质量信息平台经过学科领域专家的协调，使这些数据 公开可用，并进行外展以支持这些数据的使用，我们预计网关将 导致对全球 AD/ADRD 的风险、护理和成本产生影响的发现。