Implementation and validation of an online Caregiver and Study Partner Portal for assessment of cognitive function in older adults

实施和验证在线护理人员和研究合作伙伴门户网站，用于评估老年人的认知功能

• 批准号: 10165437
• 负责人: Rachel Lauren Nosheny
• 金额: $ 14.39万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-01 至 2022-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10165437
• 关键词: Activities of Daily Living; Alzheimer disease screening; Alzheimer' s Disease; Alzheimer' s disease diagnosis; Alzheimer' s disease pathology; Alzheimer' s disease risk; Amyloid; Amyloid beta-Protein; Area; Biometry; Brain; Brain Health Registry; Caregiver Burden; Caregivers; Caring; Clinic; Clinical; Clinical Research; Clinical Trials; Cognitive; Cohort Studies; Communities; Complex; Data; Data Reporting; Data Set; Dementia; Development; Discipline; Disease; Elderly; Enrollment; Ensure; Ethnic Origin; Failure; Family; Foundations; Future; Goals; Healthcare; Image; Impaired cognition; Interview; Lead; Measures; Mentors; Methods; Molecular; Monitor; Nerve Degeneration; Neuropsychological Tests; Neurosciences Research; Outcome; Participant; Patient Outcomes Assessments; Patient Recruitments; Patient Self-Report; Patients; Pharmaceutical Preparations; Phase; Public Health; Quality Control; Quality of life; Questionnaires; Race; Reporting; Research; Research Design; Research Personnel; Risk; Role; Sampling; Scanning; Screening procedure; Solid; Telephone Interviews; Testing; Therapeutic; Training; Underrepresented Minority; Validation; Work; care outcomes; career; clinical Diagnosis; cognitive function; cohort; daily functioning; data integrity; data portal; design; drug development; experience; functional status; health data; improved; innovation; instrumental activity of daily living; lifestyle data; mild cognitive impairment; neuroimaging; novel; novel therapeutics; online registry; pre-clinical; preclinical trial; predictive modeling; prodromal Alzheimer' s disease; recruit; response; skills; tool; treatment trial; web-based tool

PROJECT SUMMARY/ABSTRACT Alzheimer's Disease (AD) is a growing public health threat with no disease-modifying treatments. A major obstacle to providing care and developing new therapeutics is the difficulty identifying those at risk for AD or in an early disease state. Therefore, the development of scalable, accessible screening tools is a critical unmet need in the field and is the overall goal of this work. The Caregiver and Study Partner Portal (CASPP) is an innovative new web-based tool that I built and publically launched to remotely collect cognitive and functional data from a large, diverse cohort of study partner (SP)-participant dyads. The CASPP is part of the Brain Health Registry (BHR), a public online registry created by my primary mentor Dr. Weiner, currently with over 43,000 participants, which captures cognitive, health, and lifestyle data using self-report questionnaires and neuropsychological tests (NPTs). The specific scientific goal of this proposal is evaluate the construct and predictive validity of the CASPP in a diverse cohort of 10,000 SP-participant dyads. Five year longitudinal CASPP data from SPs of clinically-normal (CN), Mild Cognitive Impairment (MCI), and AD older adults will be analyzed to measure associations between online SP-report and in-clinic decline in NPT scores, participant- reported cognitive function, and SP telephone interview. Data from participant-SP dyads co-enrolled in BHR and the Alzheimer's Disease Neuroimaging Initiative (ADNI) or BHR and the Imaging Dementia-Evidence of Amyloid Scanning (IDEAS) study will be used to test whether CASPP data can predict brain β-amyloid levels and clinical diagnosis. Use of remote SP report for AD screening is a novel concept that requires me to acquire a specialized set of new skills. To conduct this proposed project and prepare me for an independent AD clinical research career, I will gain training in (1) Validation of cognitive and ADL function in older adults, including measuring construct and predictive validity, and measuring function across cognitive domains using NPTs, self-and SP-reported measures; (2) Challenges of conducting clinical AD research, especially participant recruitment/engagement, online patient-reported outcomes, and recruitment of underrepresented minorities; (3) Advanced study design and biostatistical analyses, especially using multivariable predictive modeling and linear mixed effects to study large, complex datasets. I have assembled a team of mentors and advisors who are committed to facilitating my training in these areas, and I have designed a detailed training plan that includes tutorials, hands-on experience with conducting clinical AD research, academic coursework, and relevant seminars. I plan to use the data I collect to obtain an R01 which will expand the CASPP in order to elucidate the role of SP-reported data in assessing cognitive and ADL function of older adults, and test the CASPP as an AD screening tool. These findings are likely to lead to improved methods for AD screening, better dementia healthcare, and, ultimately, accelerated development of new AD treatments.

项目摘要/摘要 阿尔茨海默氏病（AD）是一种日益增长的公共卫生威胁，没有改善疾病的治疗方法。专业 提供护理和开发新疗法的障碍是很难确定那些有AD或IN风险的人 早期疾病状态。因此，开发可扩展的，可访问的筛选工具是一个至关重要的未满足 在该领域需要，这是这项工作的总体目标。护理人员和学习伙伴门户（CASPP）是 我构建并公开启动的创新基于Web的工具，以远程收集认知和功能 来自大型研究伙伴（SP） - 参与二元组的数据。 CASPP是大脑的一部分 卫生注册表（BHR），由我的主要心理韦纳（Weiner）创建的公共在线注册表，目前已经结束 43,000名参与者，使用自我报告问卷调查捕获认知，健康和生活方式数据 神经心理学测试（NPTS）。该提案的具体科学目标评估了结构和 CASPP在10,000个SP参与者二元组的多样性队列中的预测有效性。五年纵向 来自临床正常（CN），轻度认知障碍（MCI）和AD老年人SP的CASPP数据将是 分析以衡量在线SP报告与不介入分数分数下降之间的关联，参与者 - 报告了认知功能和SP电话采访。来自BHR的参与SP二元组的数据 以及阿尔茨海默氏病神经影像学计划（ADNI）或BHR以及成像痴呆症的历史 淀粉样蛋白扫描（思想）研究将用于测试CASPP数据是否可以预测脑β-淀粉样蛋白水平 和临床诊断。使用远程SP报告进行广告筛选是一个新颖的概念，需要我 获得一套专业的新技能。进行这个拟议的项目，并为我准备独立 广告临床研究职业，我将获得（1）老年人认知和ADL功能的培训， 包括测量结构和预测有效性，以及使用认知领域的测量功能 NPT，自我报告的措施； （2）进行临床广告研究的挑战，特别是 参与者招聘/参与，在线患者报告的结果以及代表性不足的招聘 少数民族； （3）高级研究设计和生物统计分析，尤其是使用多变量预测 建模和线性混合效应以研究大型复杂数据集。我组建了一个导师团队， 致力于支持我在这些领域培训的顾问，我设计了详细的培训 计划包括教程，进行临床广告研究，学术课程的动手经验， 和相关的半手。我计划使用我收集的数据来获取R01，该R01将按顺序扩展CASPP 阐明SP报告数据在评估老年人的认知和ADL功能中的作用，并测试 CASPP作为广告筛选工具。这些发现可能会导致改进的广告筛选方法， 更好的痴呆症医疗保健，并最终加速了新的广告疗法的发展。