Bioethics Research Infrastructure Initiative: National Center on Minority Health

摘要塔斯基吉大学(TU)国家研究和卫生保健生物伦理中心与我们在华盛顿大学的合作者一起，寻求对一个项目的支持，该项目侧重于开发全面有效的方法、战略和计划，以有效地增加少数族裔在临床试验中的招募和保留。长期存在的不信任是少数群体参与研究的主要障碍，这在很大程度上是由于该国在生物医学研究中长期虐待不同人群的历史。在文化和语言多样性日益增强的时代，日益扩大的健康差距、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(吴)阿尔茨海默病研究中心的非裔美国人外联卫星开展少数族裔外展和招募计划，并界定和解决参与阿尔茨海默病研究的障碍。这一非常成功的跨学科模式将在TU和Wu进行修改和复制，(I)重点是招募少数族裔老年人参加临床试验，(Ii)促进招募少数族裔老年人进行临床试验的经验知识，(Iii)阐述潜在的生物伦理因素，以及(Iv)培训为老龄人口服务的研究人员和医疗保健专业人员。具体地说，TU将为卫生专业人员开展一项具有全国意义的生物伦理学培训计划，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、健康差距以及卫生信息的获取和传播。通过建立在每个学术站点的专业知识和不同角色的基础上，我们建议实现从有限的和往往是轶事的陈述向多方面、多学科和强有力的伙伴关系的过渡，以产生更大的后果的综合研究设计，因为正在建立的线索是为了创造一个比个别部分的总和更强大的研究和培训议程。我们假设，一个以社区为基础的、循证的、多学科的系统性招募和保留计划将导致更多的招募和保留服务不足的少数民族，以产生足够的参与率来实现临床试验的目标。首席调查员/项目总监：威廉姆斯，路德·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.