Novel Approaches to Identifying and Engaging Disadvantaged Patients with Alzheimer’s Disease (AD) in Clinical Research

识别弱势阿尔茨海默病 (AD) 患者并使之参与临床研究的新方法

• 批准号: 9977895
• 负责人: Andrea L Gilmore-Bykovskyi
• 金额: $ 23.01万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-01 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9977895
• 关键词: Address; Alzheimer disease detection; Alzheimer disease screening; Alzheimer' s Disease; Alzheimer' s disease model; Alzheimer' s disease patient; Alzheimer' s disease related dementia; Ambulatory Care; Ambulatory Care Facilities; Area; Attitude; Award; Biological; Caregivers; Caring; Child; Clinical; Clinical Data; Clinical Research; Clinical Trials; Clinical Trials Design; Code; Cognitive deficits; Data; Development; Development Plans; Diagnosis; Diagnostic; Disadvantaged; Disease; Disease Progression; Doctor of Philosophy; Effectiveness; Elderly; Electronic Health Record; Enrollment; Environment; Exclusion; Faculty; Focus Groups; Goals; Gold; Health; Health Services Accessibility; Healthcare; Impaired cognition; Improve Access; Incidence; Individual; Infrastructure; Institution; International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10); Intervention; Interview; Knowledge; Lead; Leadership; Measures; Memory; Mentors; Methods; Modeling; Moods; Natural Language Processing; Nurses; Outpatients; Patients; Performance; Phenotype; Prevalence; Readiness; Registries; Research; Research Activity; Research Personnel; Risk; Risk Factors; Scientist; Sensitivity and Specificity; Services; Symptoms; Techniques; Terminology; Testing; Text; Time; Training; Validation; Vulnerable Populations; Work; acute care; base; behavior change; care episode; career; career development; cognitive testing; cohort; community setting; design; disadvantaged population; disease phenotype; disorder risk; ethnic minority population; group intervention; health disparity; help-seeking behavior; high risk; improved; machine learning method; member; mortality; novel; novel strategies; programs; protective factors; racial and ethnic; racial minority; recruit; screening; statistical and machine learning; structured data; success; symptom management; unstructured data; willingness

PROJECT SUMMARY/ABSTRACT Despite well-documented disparities in Alzheimer’s disease (AD) prevalence, incidence, diagnosis, treatment, and mortality, individuals from disadvantaged backgrounds (e.g. racial/ethnic minorities) are disproportionately under-represented in clinical AD research. Current recruitment methods for AD research predominantly identify patients from outpatient clinics and community settings, or with pre-existing diagnoses. Reliance on these recruitment approaches may create barriers to participation for disadvantaged individuals as they are more likely to lack information about AD services, be undiagnosed and have limited access to outpatient care. Yet, greater enrollment of disadvantaged individuals into AD studies is critically needed to achieve national goals for AD research. Targeted AD screening and tailored recruitment within acute care settings has strong potential to address these gaps, as disadvantaged individuals often rely on these settings to meet their health needs. This K76 proposal is designed to provide Dr. Gilmore-Bykovskyi, PhD, a geriatric trained nurse and expert in AD symptom management with the training required for success as an independent clinician-scientist focused on improving AD identification to promote greater participation in research and access to effective care and therapies, specifically targeting high-risk disadvantaged populations. The overarching objective of the proposed research is to design screening and recruitment approaches for identifying and engaging disadvantaged AD patients/caregivers and their biological children in research from acute care settings. The proposal consists of validation of an electronic health record (EHR) Phenotype Model for AD using EHR clinical data identified in preliminary studies (Aim 1), and specification of this Model for performance among disadvantaged individuals (Aim 1a). To address recruitment from acute care environments, mixed methods strategies will inform the design of tailored recruitment approaches appropriate to acute care (Aim 2) which will be piloted with 30 AD patients/caregivers to determine their feasibility, acceptability and preliminary impact on willingness to enroll in a Trial Registry (Aim 2a). As a junior faculty member at an institution with extensive support for early stage investigators and significant infrastructure in AD disparities and EHR Phenotyping, Dr. Gilmore-Bykovskyi is in an ideal environment to complete the proposed research and pursue advanced training relevant to her career goals. Dr. Gilmore-Bykovskyi’s career development plan integrates didactic and practical training, individual mentoring and mentored research activities in the areas of 1) clinical trial design, 2) advanced statistical and machine learning techniques, 3) acute care research, 4) AD health disparities, 5) recruitment and retention of vulnerable populations and 6) leadership. This proposed award addresses fundamental gaps and barriers to improve inclusion of disadvantaged individuals in AD research while affording training and mentored research critical for Dr. Gilmore-Bykovskyi to lead an independent research program in clinical AD research.

项目摘要/摘要 尽管在阿尔茨海默病(AD)的发病率、发病率、诊断、治疗、 和死亡率，来自弱势背景的个人(例如，种族/少数民族)不成比例 在临床AD研究中代表性不足。目前AD研究的招募方法主要是 来自门诊和社区机构的患者，或有既往诊断的患者。依赖于这些 招聘方式可能会对弱势个人的参与造成障碍，因为他们更 可能缺乏有关AD服务的信息，未被诊断，获得门诊护理的机会有限。然而， 为了实现以下国家的目标，迫切需要让更多的弱势个人参加AD研究 广告研究。在急性护理环境中进行有针对性的AD筛查和量身定做的招募具有很强的潜力 消除这些差距，因为处于不利地位的个人往往依赖这些环境来满足他们的健康需求。这 K76提案旨在为Gilmore-Bykovskyi博士提供老年训练有素的护士和AD专家 症状管理和成功所需的培训作为一名独立的临床医生-科学家专注于 改善AD识别，以促进更多地参与研究和获得有效的护理和 治疗，特别是针对高危弱势人群。该计划的总体目标 拟议的研究是设计筛选和招聘方法，以确定和参与 处于不利地位的AD患者/照顾者及其亲生子女在急性护理环境中的研究。这个 提案包括使用电子健康记录(EHR)验证AD的电子健康记录(EHR)表型模型 初步研究中确定的临床数据(目标1)，以及该模型的性能规范 针对处境不利的个人(目标1a)。解决来自急性护理环境的招聘，混合 方法战略将指导设计适合急性护理的量身定做的招募方法 (目标2)将在30名AD患者/照顾者中进行试点，以确定其可行性、可接受性 以及对登记审判登记处的意愿的初步影响(目标2a)。作为一名初级教员 为早期调查人员提供广泛支持并在AD差异方面提供重要基础设施的机构 和EHR表型，Gilmore-Bykovskyi博士处于完成拟议研究的理想环境中 并追求与她的职业目标相关的高级培训。Gilmore-Bykovskyi博士的职业发展计划 在以下领域整合教学和实践培训、个人辅导和辅导研究活动1) 临床试验设计，2)先进的统计和机器学习技术，3)急性护理研究，4)AD健康 差距；5)招募和留住弱势群体；6)领导力。这项提议的奖励 解决根本差距和障碍，以改善将弱势个人纳入AD研究 同时提供培训和指导研究对Gilmore-Bykovskyi博士领导独立的 AD临床研究项目。