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: 10360682
• 负责人: MICHAEL W WEINER
• 金额: $ 64.47万
• 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/10360682
• 关键词: 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; Custom; 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 retention; patient engagement; programs; recruit; screening; software as a service; 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 该提案的总体目标是优化和自动化我们现有的在线招聘平台， 对老年人进行筛查和纵向监测，以加速跨学科的临床衰老研究。 可以使用脑健康登记处 (BHR) 来完成，该登记处是一个拥有超过 62,000 名患者的在线登记处和队列 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，优化研究环境中的高效部署，并使手动操作自动化 我们将通过为多个临床研究人员提供用户友好的方式来促进他们的工作。 访问 BHR 网站、软件和数据。 1. 研究合作伙伴优先：目前，一种创新的在线 BHR 工具收集研究合作伙伴 (SP) 信息，但 注册的 BHR 参与者必须提名 SP 加入。我们将开发和部署 SP-First，以允许 SP 加入。 重新招募，并且 SP 成为与 BHR 的第一个或唯一的联系点，这将有助于招募。 以及老年人参与 BHR 并最终参与其他阿尔茨海默病 (AD) 研究和临床 试验。 2. 推荐：优化和自动化我们当前的系统，该系统已将超过 27,000 名 BHR 参与者推荐给 临床AD和衰老研究，包括临床试验和观察研究，这将大大增加使用。 该计划的总体目标是促进 AD 和衰老临床研究的招募和筛选。 3. 共同注册：优化我们当前用于注册现有临床队列的系统并使其完全自动化 我们将通过数据链接实现 BHR 的共同注册流程自动化，以实现高效、可扩展、 共同注册工具的适应可以促进在线方法的验证， 并且可能会提高临床研究参与者的纵向参与度和保留率。 4. 软件即服务 (SaaS)：BHR 将 BHR 平台作为软件服务许可给合作者，这些合作者 将在自己的 IRB 下创建自己的注册中心或推荐计划，从而无需创建新的注册中心 我们将自动化 SaaS 流程，以高度促进许多研究人员的可扩展使用。 5. 数据共享：自动化数据链接过程，创建数据集，实现数据的高度可扩展 BHR 一般研究数据中的去识别化数据将提供给 BHR。 研究社区将允许研究人员查询数据库、创建定制的界面。 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测试，并将生物流体数据整合到 BHR 数据库中。 我们创新的、高度可扩展的平台将为调查人员提供用户友好的平台，具有巨大的价值。 用于招募、评估和纵向监测其群体的互联网工具。