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Recruiting and retaining participants from disadvantaged neighborhoods in registries

在登记处招募和留住弱势社区的参与者

基本信息

批准号：
10614609
负责人：
Daniel L Gillen
金额：
$ 71.48万
依托单位：
UNIVERSITY OF CALIFORNIA-IRVINE
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-05-01 至 2027-01-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10614609
关键词：
Acceleration Accounting Address Advertising Alzheimer&apos s disease related dementia Alzheimer&apos s disease risk Area Attitude Bolus Infusion Brain Diseases Characteristics Clinical Research Community Outreach Computer software Consent Data Data Sources Databases Disease Disparity Effectiveness Eligibility Determination Enrollment Ethnic Origin Face Facebook General Population Individual Institution Interruption Intervention Investments Methodology Methods Modeling Modernization Modification Multilingualism National Health and Nutrition Examination Survey Neighborhoods Outcome Participant Patient Recruitments Persons Population Population Heterogeneity Prevalence Probability Samples Procedures Public Health Questionnaires Race Randomized Registries Research Research Personnel Resources Risk Sampling Sampling Biases Series Subgroup Testing Time Uncertainty Validity of Results Weight Work cohort combat cost crowdsourcing deprivation design digital disorder risk improved indexing intervention effect neighborhood disadvantage novel open source participant retention recruit repository research study retention rate social health determinants tool willingness

项目摘要

PROJECT SUMMARY Alzheimer’s disease and related disorders (ADRD) research represents a major national investment. ADRD clinical research faces delays and risks to internal and external validity resulting from challenges to efficient accrual, especially inadequate inclusion of populations at increased risk for disease due to social determinants of health. Recruitment registries are tools to accelerate accrual in ADRD research. Registries are repositories of potentially eligible individuals who have consented to be contacted about studies, reducing the need for serial recruitment by enabling bolus enrollment of ready cohorts. Few data address essential questions about registry design, conduct, and effectiveness in aiding ADRD research recruitment. How best to recruit and retain participants to registries and whether registries can address the urgent need to diversify clinical research samples are unknown. Furthermore, how registry samples compare to other research populations has not been investigated. This proposal investigates traditional and modern approaches to registry recruitment and asks critical questions about inclusion of participants from underserved neighborhoods and registrant retention. Given that registries are, by definition, convenience samples, we also aim to quantify the bias associated with these recruitment tools and develop methodology for addressing this bias. This project will produce essential information about resource utilization in recruitment registries and provide critical guidance for the field about how best to use these important tools.

项目总结