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.

项目总结 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 由于对效率的挑战，临床研究面临延迟和内部和外部有效性的风险 应计费用，特别是没有充分纳入因社会决定因素而增加疾病风险的人群 关于健康的。招聘登记是加速ADRD研究收益的工具。注册表是以下内容的存储库 同意就研究进行联系的潜在符合条件的个人，减少了对连续 通过启用已准备好的队列的成批登记进行招聘。很少有数据涉及注册表的基本问题 协助ADRD研究人员招募的设计、实施和有效性。如何最好地招聘和留住人才 注册的参与者以及注册是否可以满足临床研究多样化的迫切需求 样本尚不清楚。此外，登记样本与其他研究人群的比较情况还没有得到 调查过了。该提案调查了传统和现代的登记处征聘办法，并要求 关于纳入来自服务不足社区的参与者和留住注册人的关键问题。vt.给出 根据定义，登记是方便的样本，我们的目标也是量化与这些相关的偏差 招聘工具，并制定解决这一偏见的方法。这个项目将产生必要的 关于征聘登记处资源利用情况的信息，并为外地提供关于以下方面的重要指导 如何最好地使用这些重要的工具。