Bioethics Research Infrastructure Initiative: National Center on Minority Health

塔斯基吉大学（TU）国家研究与卫生保健生物伦理中心与我们在华盛顿大学的合作伙伴一起，为一个项目寻求支持，该项目专注于开发全面有效的方法、策略和计划，以有效地增加临床试验中少数民族的招募和保留。长期的不信任是少数民族参与研究的主要障碍，这在很大程度上是由于美国长期以来在生物医学研究中虐待不同人群的历史。在一个文化和语言日益多样化的时代，不断扩大的健康差距，越来越多地使用医疗技术和遗传信息，以及研究人员的文化能力，都加剧了这些障碍的影响。华盛顿大学（WU）阿尔茨海默病研究中心的非裔美国人外展卫星开展少数民族外展和招募计划，并确定和解决阿尔茨海默病研究参与的障碍。这一非常成功的跨学科模式将在TU和WU进行修改和复制，重点是（一般）在临床试验中招募少数民族老年人，（ii）推进临床试验招募少数民族老年人的经验知识，（iii）详细说明潜在的生物伦理因素，以及（iv）培训为老年人服务的研究人员和医疗保健专业人员。具体而言，TU将为卫生专业人员开展一项全国性的生物伦理学培训计划，并同时解决临床研究中的生物伦理学问题，包括研究设计、统计分析、卫生经济学、卫生差异以及卫生信息的获取和传播。通过建立每个学术站点的专业知识和不同的角色，我们建议实现从有限的、经常是轶事的陈述到多方面的、多学科的、强有力的伙伴关系的过渡，从而产生更大后果的总体研究设计，因为正在构建的链创建的研究和培训议程比单个部分的总和要强大得多。我们假设，以社区为基础的、循证的、多学科的系统招募和保留计划将导致招募和保留服务不足的少数群体，从而产生足够的参与率，以实现临床试验的目标。首席研究员/项目主任：Williams， Luther S。

Abstract The Tuskegee University (TU) National Center for Bioethics in Research and Health Care, in conjunction with our collaborators at Washington University, seeks support for a project focused on the development of comprehensive and effective approaches, strategies and programs to effectively increase minority recruitment and retention into clinical trials. Longstanding mistrust is a principal barrier to minority research participation and is substantially owing to the nation's longstanding history of mistreatment of diverse populations for biomedical research. Widening health disparities, increasing use of medical technologies and genetic information, and the cultural competency of researchers in an era of increased cultural and language diversity heighten the impact of these barriers. The Washington University (WU) Alzheimer's Disease Research Center's African American Outreach Satellite conducts minority outreach and recruitment programs and defines and addresses barriers to Alzheimer's disease research participation. This highly successful interdisciplinary model will be modified and replicated at both TU and WU with (i) a focus on enrolling minority elderly in clinical trials (in general), (ii) advancing the empirical knowledge of recruitment of minority elderly for clinical trials, (iii) elaborating underlying bioethical factors, and (iv) training researchers and healthcare professionals who serve aged populations. Specifically, TU will conduct a nationally significant bioethics training program for health professionals and concomitantly address bioethics in clinical research, inclusive of research designs, statistical analyses, health economics, health disparities, and health information access and dissemination. By building on the expertise and differential roles of each academic site, we proposed to effect the transition from limited and often anecdotal representations to a multifaceted, multidisciplinary, and robust partnership to yield an aggregate research design of greater consequentiality, owing the strands being built to create a research and training agenda much stronger than the sum of the individual parts. We hypothesize that a community-based, evidence-informed, multidisciplinary systematic recruitment and retention program will lead to increased recruitment and retention of underserved minorities to yield participation rates sufficient to achieve the objectives of clinical trials. Principal Investigator/Project Director: Williams, Luther S.