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: 9895215
• 负责人: MICHAEL W WEINER
• 金额: $ 65.85万
• 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/9895215
• 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; flexibility; follow-up; genetic testing; health data; improved; innovation; lifestyle data; novel; online registry; participant retention; 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.

摘要 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， 筛选和纵向监测老年人，以加速跨学科的临床衰老研究。这将 使用脑健康注册表（BHR）完成，这是一个在线注册表和队列， 参加者登记。BHR使用自我和研究方法收集纵向认知、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，并自动化手动 可扩展性的步骤。我们将通过为多名临床研究人员提供用户友好的 访问BHR网站、软件和数据。具体目标： 1.研究伙伴第一：目前一个创新的在线BHR工具收集研究伙伴（SP）信息，但 已登记的BHR参与者必须提名SP加入。我们将开发和部署SP优先， 重新招募，并让SP成为与BHR的第一个或唯一联系点。这将有助于招聘 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 审判 2.推荐：优化和自动化我们目前的系统，该系统已将27，000多名BHR参与者推荐给 临床AD和衰老研究，包括临床试验和观察性研究。这将大大增加使用 该计划的总体目标是促进AD和老龄化临床研究的招募和筛选。 3.共同入组：为了优化和完全自动化我们目前的系统，以招募现有临床队列， 带数据链接的BHR。我们将为研究者自动化联合入组流程，以实现高效、可扩展、 以及将该工具用于多种老化研究。共同登记可以促进在线方法的验证， 并且可能改善参与者在临床研究中的纵向参与和保留。 4.软件即服务（SaaS）：BHR将BHR平台作为软件服务许可给协作者， 将在自己的IRB下创建自己的登记或转诊计划，无需创建新的登记 平台我们将自动化SaaS流程，以促进许多调查人员的高度可扩展性使用。 5.数据共享：自动化数据链接过程，创建数据集，实现高度可扩展的数据 访问和数据分发。一般BHR研究数据中的去识别数据将提供给 研究社区。一个新颖的界面将允许调查人员查询数据库，创建定制的 数据集，上传和下载数据。此外，我们还将扩大收集生物流体的能力并使其自动化。 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。 我们创新的、高度可扩展的平台将为调查人员提供用户友好的 互联网工具，用于招募、评估和纵向监测其同龄人。