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.

摘要