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 阿尔茨海默氏病和相关疾病（ADRD）研究代表了一项重大的全国投资。 adrd 临床研究面临着由于挑战到高效而产生的内部和外部有效性的延误和风险 应计，尤其是由于社会决定者造成的疾病风险增加的人群的纳入不足 健康。招聘注册机构是在ADRD研究中加速累积的工具。注册表是 同意与研究联系的潜在符合条件的个人，从而减少了连续的需求 通过启用注册人群入学来招募。很少有数据解决有关注册表的基本问题 在协助ADRD研究招聘方面的设计，行为和有效性。如何最好地招募和保留 注册表的参与者以及注册机构是否可以解决迫切需要多元化临床研究的需求 样本未知。此外，注册表样本与其他研究人群相比尚未 调查。该提案调查了传统和现代的注册招聘方法，并询问 关于纳入服务不足的社区和注册保留率的参与者的关键问题。给出 根据定义，注册机构是方便样本，我们还旨在量化与这些相关的偏见 招聘工具并开发解决这一偏见的方法。这个项目将产生必需品 有关招聘登记处资源利用的信息，并为该领域提供关键指导 如何最好地使用这些重要工具。