DEploying High ValuE LOngitudinal Population-Based dAta in Dementia Research (DEVELOP AD Research)

在痴呆症研究中部署基于人群的高价值纵向数据（DEVELOP AD 研究）

• 批准号: 10689035
• 负责人: KENNETH E. COVINSKY
• 金额: $ 234.25万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-30 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10689035
• 关键词: Address; Adult; Affect; Age; Aging; Algorithms; Alzheimer' s disease related dementia; Caregivers; Caring; Cessation of life; Chronic; Chronic Disease; Clinical; Code; Collaborations; Communities; Complex; Coupled; Data; Data Collection; Data Set; Dementia; Disease; Drug Prescriptions; Economics; Elderly; Enrollment; Event; Face; Family; Family health status; Financial Hardship; Funding; Future; Geography; Goals; Grant; Health; Health Services Research; Health and Retirement Study; Health system; Healthcare; Healthcare Systems; Home; Hospice Care; Intervention; Lead; Medical; Methodology; Modeling; Nursing Homes; Outcome; Participant; Patients; Persons; Pharmaceutical Preparations; Play; Policies; Policy Maker; Population Heterogeneity; Population Study; Productivity; Quality of life; Research; Research Activity; Research Personnel; Research Project Grants; Resources; Sample Size; Sampling; Science; System; Vulnerable Populations; clinical care; community based care; community based service; cost; data dictionary; data resource; dementia care; end of life; family burden; follow-up; health data; health service use; hospice environment; improved; improved outcome; population based; programs; psychologic; psychosocial; retention rate; social; social health determinants; social stigma; societal costs; socioeconomics; trend

PROJECT SUMMARY As the aging pyramid squares, healthcare systems face unprecedented numbers of older adults living with serious chronic illness, escalating costs, and reductions in available caregivers. These challenges are greatly magnified in the setting of Alzheimer’s disease and related dementias (ADRD). Living with ADRD is characterized by physical and psychosocial suffering, mismatches between patient goals of care and treatments received; high physical, psychological, and financial burdens on families and the health system. This program project, Deploying High Value Longitudinal Population-based data in Dementia Research (DEVELOP AD RESEARCH), breaks new ground by employing rich population-based data to develop a comprehensive longitudinal understanding of dementia that will better inform clinical and policy interventions and improve healthcare for persons with dementia and their families. Methodological constraints have limited the ability to examine the complex longitudinal interplay of medical, social, and system factors known to influence health, healthcare, and quality of life and death for persons with dementia. The need to enroll samples large enough to account for the population’s heterogeneity, the necessity of gathering data from patients and caregivers across diverse care settings, difficulties collecting social determinants of health data due to budgetary and primary data collection effort constraints, and a duration of illness that exceeds standard 5-year grant funding periods have limited the ability to answer important questions. The Health and Retirement Study (HRS) and the National Health and Aging Trends Study (NHATS) are ongoing NIA funded population-based studies that contain rich longitudinal patient and family health, social, and economic data and, through their linkages to CMS claims, comprehensive information on health service utilization and costs. Due to their maturity, numbers of participants, retention rates, sampling frames, and validated algorithms for identifying dementia, both datasets are now able to provide sufficient sample sizes, variables, and longitudinal follow-up to begin to address existing gaps in dementia research. Marshalling pre- existing resources and highly productive collaborations among project investigators, we break new ground by proposing integrated research that examines the complex longitudinal interplay of medical, social, and system factors known to influence health, healthcare, and quality of life and death for persons with dementia. Our five research projects address major questions in dementia science whose answers demand the use of the population-based data now available through NHATS and/or HRS. Our two resource cores support the complex analytics required of each research project, integrate and coordinate research activities, disseminate findings and data resources including programming code and data dictionaries, create a platform of research to support early-stage investigators, and identify future directions and research collaborations.

项目总结 随着老龄化金字塔的出现，医疗保健系统面临着前所未有的数量的老年人与 严重的慢性病，不断上升的成本，以及可用照顾者的减少。这些挑战是巨大的 在阿尔茨海默病和相关痴呆症(ADRD)的背景下放大。与ADRD一起生活是 以身体和心理社会痛苦为特征，患者的护理目标和 接受治疗；对家庭和卫生系统造成沉重的身体、心理和经济负担。 该计划项目，在痴呆症研究中部署高价值纵向人群数据 (发展AD研究)，通过利用丰富的基于人口的数据来开发 对痴呆症的全面纵向了解将更好地为临床和政策干预提供信息 改善痴呆症患者及其家人的医疗保健。 方法学的限制限制了检查复杂的纵向相互作用的能力， 已知的影响健康、医疗保健、生活质量和死亡的社会和系统因素 痴呆症。需要招募足够大的样本来解释种群的异质性， 需要从不同的护理环境中收集患者和护理人员的数据，收集困难 由于预算和主要数据收集工作的限制，健康数据的社会决定因素，以及 病程超过标准的5年赠款资助期限制了回答问题的能力 重要的问题。 健康与退休研究(HRS)和国家健康与老龄化趋势研究(NHATS)是 正在进行的NIA资助的基于人群的研究，包含丰富的纵向患者和家庭健康，社会， 和经济数据，并通过它们与合作医疗索赔的联系，提供关于卫生服务的全面信息 利用率和成本。由于他们的成熟度、参与者的数量、保留率、采样帧和 经过验证的用于识别痴呆症的算法，两个数据集现在都能够提供足够的样本大小， 变量和纵向跟踪，以开始解决痴呆症研究中存在的差距。编组前- 现有资源和项目调查人员之间的高效协作，我们通过以下方式开辟了新的领域 提出综合研究，考察医疗、社会和系统之间复杂的纵向相互作用 已知的影响痴呆症患者的健康、医疗保健以及生活和死亡质量的因素。我们的五个人 研究项目解决了痴呆症科学中的主要问题，其答案需要使用 现可通过NHATS和/或HRS获得基于人口的数据。我们的两个资源核心支持 对每个研究项目进行复杂的分析，整合和协调研究活动，传播 调查结果和数据资源，包括编程代码和数据词典，创建一个研究平台 支持早期研究人员，并确定未来方向和研究合作。