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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

基本信息

批准号：
9770763
负责人：
Andrea L Gilmore-Bykovskyi
金额：
$ 23.61万
依托单位：
UNIVERSITY OF WISCONSIN-MADISON
依托单位国家：
美国
项目类别：
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/9770763
关键词：
Acute Address Alzheimer disease detection Alzheimer disease screening Alzheimer&apos s Disease Alzheimer&apos s disease model Alzheimer&apos 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 Machine Learning 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 Structure Symptoms Techniques Terminology Testing Text Time Training Validation Vulnerable Populations Work 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 learning strategy member mortality novel novel strategies programs protective factors racial and ethnic racial minority recruit screening success symptom management willingness

项目摘要

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.

项目总结/文摘