Adult Changes in Thought (ACT) Research Program Core B: Clinical Core

成人思想转变 (ACT) 研究计划核心 B：临床核心

• 批准号: 10672348
• 负责人: Paul K Crane
• 金额: $ 339.01万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-15 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10672348
• 关键词: Address; Adult; African American population; Aging; Alzheimer' s Disease; Area; Autopsy; Calibration; Characteristics; Clinic; Clinic Visits; Clinical; Cognition; Collaborations; Communication; Companions; Consent; County; Data; Data Collection; Dementia; Documentation; Elderly; Elements; Eligibility Determination; Enrollment; Ensure; Ethnic Origin; Family; Geography; Goals; Health Status; Home; Home visitation; Individual; Infrastructure; Investments; Life; Maps; Methods; Minority Enrollment; Modernization; Moods; Participant; Physical Function; Populations at Risk; Procedures; Process; Quality Control; Race; Randomized; Research; Risk Factors; Sampling; Social status; Time; Underrepresented Minority; Visit; Washington; Work; cognitive testing; cohort; data collection site; data exchange; data sharing; data standards; dementia risk; design; digital; ethnic diversity; ethnic minority; follow-up; improved; neuropathology; new technology; population based; programs; racial diversity; racial minority; repository; sociodemographics; sound

The overarching goal of the Clinical Core (Core B) is to collect data in support of the Adult Changes in Thought (ACT) U19 Program Projects, Cores, and other studies using ACT data. The Clinical Core is responsible for participant communication and clinic and home visit data collection from ACT study participants, and coordinates with other Projects and Cores that include other data collection activities. One scientific challenge the Clinical Core must address is maintaining backwards compatibility while facilitating data collection using newer, modern methods and maintaining harmonization with companion studies. These considerations inform all aspects of the Clinical Core’s activities. The Clinical Core’s Specific Aims are: (1) Follow and retain current ACT participants. Refinements in the U19 Program include digital capture of extensive information on cognition beyond that previously collected using traditional approaches. The Clinical Core will continue data collection from home-based visits, an essential design characteristic for cohort retention. The Clinical Core will: (1a) expand, modernize, and improve established ACT data collection to follow cognition, physical function and function in daily life, interval changes in risk factors, health and social status and continue to identify incident cases of dementia and Alzheimer’s disease; and (1b) support proposed Projects and Cores and ACT related affiliated studies with targeted new data collection adding new processes to digitize and modernize cognitive tests. (2) Enroll, follow, and retain new ACT participants. The Clinical Core plans to increase enrollment to grow from 2,000 to 3,000 active dementia-free individuals. We will increase our geographic reach to include more sociodemographically and racially/ethnically diverse areas in the greater Puget Sound area and will oversample racial/ethnic minorities to achieve a goal of over 20% racial/ethnic minority enrollment. (3) Acquire and maintain antemortem autopsy approval and enhance communication with participants and their families to optimize postmortem intervals (PMI) for decedents who come to autopsy. The ACT study’s extensive infrastructure has led to >850 autopsies to date from the ACT cohort. The Clinical Core will work closely with the Neuropathology Core to use continuous quality improvement (CQI) approaches to maximize the proportion of consenting decedents who receive a rapid autopsy. (4) Coordinate with the Administrative and Data and Analysis Cores to ensure state-of-the-art quality control and data documentation of all data collected by the Clinical Core. The ACT Clinical Core builds on a quarter century of data collection from a population-based cohort of older adults and will expand, modernize and improve ACT data collection, provide outstanding support of Projects, Cores, and affiliated studies and those receiving ACT data through extensive data sharing infrastructure and have a larger and more sociodemographic and racially/ethnically diverse population base. With this U19 expansion, the Clinical Core can substantially increase ACT’s contributions to scientific understanding of aging, dementia and Alzheimer’s disease.

临床核心（核心 B）的总体目标是收集数据以支持成人思想转变 (ACT) 临床核心负责使用 ACT 数据的 U19 计划项目、核心和其他研究。 ACT 研究参与者的沟通、临床和家访数据收集，以及 与包括其他数据收集活动的其他项目和核心进行协调。 临床核心必须解决的是保持向后兼容性，同时促进数据收集 这些考虑因素提供了更新、现代的方法并与同伴研究保持协调。 临床核心活动的所有方面 临床核心的具体目标是： (1) 遵循并保留当前的情况。 ACT 参与者对 U19 计划进行了改进，包括对大量认知信息进行数字化捕捉。 除了之前使用传统方法收集的数据外，临床核心还将继续收集数据。 从家庭访问中，队列保留的一个基本设计特征将：（1a） 扩展、现代化和改进现有的 ACT 数据收集，以跟踪认知、身体功能和 日常生活功能、危险因素、健康和社会状况的间隔变化，并持续识别事件 痴呆症和阿尔茨海默病病例；以及 (1b) 支持拟议的项目和核心以及 ACT 相关的项目 附属研究有针对性地收集新数据，添加新流程以实现认知数字化和现代化 (2) 注册、跟踪和留住新的 ACT 参与者。临床核心计划增加注册人数。 我们将扩大我们的地理覆盖范围，将活跃的无痴呆症患者从 2,000 名增加到 3,000 名。 大普吉特海湾地区的社会人口和种族/民族更加多样化，并将 对少数族裔/族裔进行过度抽样，以实现少数族裔/族裔入学率超过 20% 的目标 (3) 获得少数族裔/族裔入学率。 维持生前尸检批准并加强与参与者及其家属的沟通， 优化前来尸检的死者的尸检间隔 (PMI)。 ACT 研究的广泛范围。 迄今为止，基础设施已对 ACT 队列进行了超过 850 例尸检，临床核心将与该中心密切合作。 神经病理学核心使用持续质量改进（CQI）方法来最大化比例 (4) 与行政和数据协调 分析核心可确保对收集的所有数据进行最先进的质量控制和数据记录 临床核心。ACT 临床核心建立在四分之一个世纪的基于人群的数据收集之上。 老年人群，并将扩大、现代化和改进 ACT 数据收集，提供杰出的 支持项目、核心和附属研究以及通过广泛的数据共享接收 ACT 数据的研究 基础设施，并拥有更大、社会人口和种族/民族多样化的人口基础。 通过 U19 的扩展，临床核心可以大大增加 ACT 对科学的贡献 了解衰老、痴呆和阿尔茨海默病。