The Brain Health Registry for facilitating interdisciplinary aging research

促进跨学科衰老研究的脑健康登记处

• 批准号: 10579837
• 负责人: Rachel Lauren Nosheny
• 金额: $ 63.89万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-04-15 至 2025-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10579837
• 关键词: Acceleration; Aging; Alzheimer disease screening; Alzheimer' s Disease; Alzheimer’s disease biomarker; Biological Markers; Brain Health Registry; Clinic; Clinical; Clinical Research; Clinical Trials; Cognitive; Cognitive aging; Collaborations; Collection; Communication; Communities; Computer software; DNA; Data; Data Linkages; Data Set; Databases; Elderly; Enrollment; Feedback; Genetic; Goals; Health; Impaired cognition; Information Technology; Infrastructure; Institutional Review Boards; Internet; Licensing; Life Style; Link; Manuals; Methods; Modeling; Monitor; Neuropsychological Tests; Neurosciences; Observational Study; Participant; Plasma; Process; Questionnaires; Registries; Reporting; Research; Research Personnel; Resource Sharing; Saliva; Science; Services; Site; Surveys; System; Testing; Time; Validation; Work; clinical diagnosis; cognitive testing; cohort; cost effective; data access; data de-identification; data registry; data sharing; database query; eligible participant; feasibility testing; flexibility; follow-up; genetic testing; health data; improved; innovation; lifestyle data; novel; online registry; participant enrollment; participant retention; patient engagement; programs; recruit; screening; software as a service; technology platform; therapy development; tool; user-friendly; validation studies; web site

ABSTRACT The overall goal of this proposal is to optimize and automate our existing online platform for recruitment, screening, and longitudinal monitoring of elders to accelerate interdisciplinary clinical aging research. This will be accomplished using the Brain Health Registry (BHR), an online registry and cohort with over 62,000 participants enrolled. The BHR collects longitudinal cognitive, health, and lifestyle data using self- and study partner-report surveys and neuropsychological tests. The BHR platform has been used by many collaborators. We will expand platform capabilities, optimize for efficient deployment in research settings, and automate manual steps for scalability. We will facilitate the work of multiple clinical researchers by providing them user friendly access to the BHR website, software and data. Specific Aims: 1. Study Partner First: Currently an innovative online BHR tool collects study partner (SP) information, but an enrolled BHR participant must nominate a SP to join. We will develop and deploy SP-First to allow SPs to be recruited de novo and for the SP to be the first or only point of contact with BHR. This will facilitate recruitment and engagement of older adults into BHR and eventually into other Alzheimer’s disease (AD) studies and clinical trials. 2. Referrals: To optimize and automate our current system which has referred over 27,000 BHR participants to clinical AD and aging studies, including clinical trials and observational studies. This will greatly increase use of this program, with the overall goal of facilitating recruitment and screening for AD and aging clinical studies. 3. Co-enrollments: To optimize and fully automate our current system for enrolling existing clinical cohorts in BHR with data linkage. We will automate the co-enrollment process for investigators to enable efficient, scalable, and adaptation of the tool for multiple aging studies. Co-enrollment can facilitate validation of online methods, and is likely to improve longitudinal engagement and retention of participants in in-clinic studies. 4. Software as a Service (SaaS): BHR licenses the BHR platform as a software service to collaborators who will create their own registries or referral programs under their own IRB, removing the need to create new registry platforms. We will automate the SaaS process to facilitate highly scalable use by many investigators. 5. Data Sharing: To automate the process of data linkage, creating datasets, enabling highly scalable data access, and data distribution. De-identified data from the general BHR study data will be made available to the research community. A novel interface will allow investigators to query the database, create customized datasets, upload and download data. In addition, we will expand and automate the capability to collect biofluids for biomarker and genetic testing, and to integrate biofluids data into the BHR database. Our innovative, highly-scalable platform will be of great value to investigators by providing them with user-friendly internet tools for recruitment, assessment and longitudinal monitoring of their cohorts.

抽象的 该建议的总体目标是优化和自动化我们现有的在线招聘平台， 筛查和对长辈的纵向监测，以加速跨学科的临床老龄化研究。这会 可以使用大脑健康注册表（BHR），一个在线注册表和62,000多个人群来完成 参与者参加了。 BHR使用自我和研究收集纵向认知，健康和生活方式数据 合作伙伴报告调查和神经心理学测试。 BHR平台已被许多合作者使用。 我们将扩展平台功能，优化以在研究设置中有效部署并自动化手册 可扩展性的步骤。我们将通过提供用户友好的多个临床研究人员的工作来支持他们的工作 访问BHR网站，软件和数据。具体目的： 1。学习伙伴首先：目前是创新的在线BHR工具收集学习合作伙伴（SP）信息，但 注册的BHR参与者必须提名SP参加。我们将开发和部署SP-Fir，以允许SPS成为 从头招募，SP是与BHR的第一个或唯一接触点。这将有助于招聘 老年人参与BHR，最终参与其他阿尔茨海默氏病（AD）研究和临床 试验。 2。推荐：优化和自动化我们当前的系统，该系统已将27,000多名BHR参与者转介给 临床广告和老化研究，包括临床试验和观察性研究。这将大大增加使用 该计划的总体目标是促进招募和筛查广告和衰老临床研究。 3。共同入学：优化并充分自动化我们当前的系统以招募现有的临床队列 BHR具有数据链接。我们将自动化共同入学过程，以供研究人员实现高效，可扩展性， 并适应该工具进行多个衰老研究。共同注册可以促进验证在线方法， 并且很可能会改善参与者在临床研究中的纵向参与和保留。 4。软件作为服务（SaaS）：BHR许可BHR平台作为与合作者的软件服务 将根据自己的IRB创建自己的注册表或推荐程序，消除创建新注册表的需求 平台。我们将自动化SaaS流程，以促进许多研究人员的高度可扩展使用。 5。数据共享：自动化数据链接的过程，创建数据集，启用高度可扩展的数据 访问和数据分发。从一般BHR研究数据中取消识别数据将提供给 研究社区。一个新颖的界面将允许调查人员查询数据库，创建自定义 数据集，上传和下载数据。此外，我们将扩展和自动化收集生物流体的能力 用于生物标志物和基因检测，并将生物流体数据整合到BHR数据库中。 我们的创新性，高度估计的平台将通过为调查人员提供用户友好的 招募，评估和纵向监控的互联网工具。