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

• 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
• 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' s disease related dementia; Alzheimer' 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

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.

项目概要 阿尔茨海默病及相关疾病 (ADRD) 研究是一项重大的国家投资。 ADRD 由于效率挑战，临床研究面临延迟以及内部和外部有效性的风险 权责发生制，尤其是由于社会决定因素而没有充分纳入疾病风险增加的人群 的健康。招聘登记是加速 ADRD 研究增长的工具。注册表是 同意就研究进行联系的潜在合格个人，从而减少连续研究的需要 通过对准备好的队列进行推注注册来进行招募。很少有数据能够解决有关注册的基本问题 帮助 ADRD 研究招募的设计、实施和有效性。如何最好地招募和留住人才 注册中心的参与者以及注册中心是否可以满足临床研究多样化的迫切需要 样品未知。此外，登记样本与其他研究人群的比较尚未得到证实。 调查了。该提案调查了传统和现代的注册管理机构招聘方法，并要求 关于纳入来自服务不足社区的参与者和保留注册者的关键问题。给定 根据定义，注册表是方便样本，我们还旨在量化与这些相关的偏差 招聘工具并制定解决这种偏见的方法。该项目将产生必需的 有关招聘登记处资源利用的信息，并为该领域提供重要指导 如何最好地使用这些重要的工具。