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.

项目摘要 阿尔茨海默病和相关疾病（ADRD）的研究是一项重大的国家投资。ADRD 临床研究面临延迟和风险，内部和外部有效性的挑战， 增加，特别是由于社会决定因素而使疾病风险增加的人口纳入不足 of health.招募登记是加速ADRD研究的工具。登记册是 已同意就研究进行联系的潜在合格个体，减少了对序列的需求 通过启用就绪队列的推注入组进行招募。很少有数据涉及有关登记册的基本问题 设计，行为和有效性，以帮助ADRD研究招募。如何最好地招聘和留住人才 登记研究的参与者以及登记研究是否能够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情况还没有得到证实。 研究了本提案调查了登记处征聘的传统和现代办法， 关于包括来自服务不足社区的参与者和注册人保留的关键问题。给定 根据定义，注册表是方便样本，我们的目标也是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。该项目将产生重要的 关于征聘登记册中资源利用情况的信息，并为外地提供以下方面的重要指导： 如何更好地使用这些重要工具。