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: 10615460
• 负责人: KENNETH E. COVINSKY
• 金额: $ 41.1万
• 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/10615460
• 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; Marshal; Medical; Methodology; Modeling; Nursing Homes; Outcome; Patients; Persons; Pharmaceutical Preparations; Play; Policies; Policy Maker; Population Heterogeneity; Population Study; Quality of life; Research; Research Activity; Research Personnel; Research Project Grants; Resources; Sample Size; Sampling; Science; System; Vulnerable Populations; base; clinical care; community based care; community based service; cost; data dictionary; data resource; dementia care; end of life; family burden; follow-up; health care quality; health data; health service use; hospice environment; improved; improved outcome; participant retention; 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.

项目摘要 作为衰老的金字塔正方形，医疗系统面临着前所未有的老年人 严重的慢性病，​​成本升级以及可用的护理人员的减少。这些挑战很棒 在阿尔茨海默氏病和相关痴呆症（ADRD）的情况下放大。与Adrd一起生活是 以身体和社会心理痛苦为特征，患者的护理目标与 接受治疗；对家庭和卫生系统的身体，心理和金融燃烧很高。 该计划项目，在痴呆研究中部署高价值的基于纵向人群的数据 （开发广告研究），通过采用丰富的基于人群的数据来开发一个新的基础 对痴呆症的全面纵向理解，可以更好地为临床和政策干预提供信息 并改善痴呆症患者及其家人的医疗保健。 方法学的限制因素限制了检查医学的复杂纵向相互作用的能力， 社会和系统因素已知会影响患有患者的健康，医疗保健以及生与死 失智。需要注册足够大的样品以解释人口的异质性， 需要从潜水员护理环境中收集患者和照顾者的数据，很难收集 由于预算和主要数据收集工作限制而导致的健康数据的社会决定者，以及 超过标准5年赠款期限的疾病持续时间限制了回答的能力 重要问题。 健康与退休研究（HRS）以及国家健康与衰老趋势研究（NHATS）是 正在进行的NIA资助的基于人群的研究，其中包含丰富的纵向患者和家庭健康，社会， 和经济数据以及通过与CMS索赔的联系，有关卫生服务的全面信息 利用和成本。由于他们的成熟度，参与者的数量，保留率，抽样框架以及 经过验证的算法识别痴呆症，两个数据集现在都能提供足够的样本量， 变量和纵向随访开始解决痴呆症研究中现有差距。编组预 现有资源和项目调查人员之间的高产合作 提出综合研究，研究医学，社会和系统的复杂纵向相互作用 已知会影响痴呆症患者的健康，医疗保健以及生与死的因素。我们的五个 研究项目解决了痴呆科学中的主要问题，其答案要求使用 现在，基于人群的数据可通过NHAT和/或HRS获得。我们的两个资源核心支持 每个研究项目所需的复杂分析，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字典，创建一个研究平台 支持早期研究人员，并确定未来的方向和研究合作。