Improving Minority Health in Rheumatic Diseases

项目总结 我们建议在南卡罗来纳医科大学建立一个核心的临床研究中心，名为 风湿性疾病中的少数民族健康(IMHRD，发音为I Are)。它的使命是促进知识 关于患有或有患病风险的非裔美国人的临床护理和健康结果 发展中的系统性红斑狼疮、硬皮病和其他使人衰弱的风湿病，因此 改善他们的健康状况。该中心建立在风湿学、生物统计学、 公共健康科学和健康差距研究，加上信任和经过证明的 招募非洲裔美国人患者进行临床研究，特别是在过去4年中 我们的NIAMS P60支持的关于非裔美国人风湿性疾病的MCRC。新的CCCR将保留 并加强MCRC的领导能力和独特资源，包括三个核心：行政、方法、 以及临床和社区资源。我们寻求通过以下方式影响风湿病的少数民族健康：a)提供 从少数狼疮和硬皮病患者到越来越多的 MUSC和其他地方的研究人员定义风湿病的具体发病机制和 进展；b)加强电子健康记录的使用，以确定和招募临床上的少数群体参与者 研究项目；c)为临床和转化性研究以及在 研究基因x基因与基因x环境的相互作用；及d)加强社区参与 提高对风湿病的认识和健康促进，增加少数群体参与临床 研究。我们的中心将为其他研究人员和CCCR提供独特的资源和方法。特定的 目标是：1.促进以非裔美国人狼疮为中心的翻译、临床和结果研究 和硬皮病；2.开发使用电子健康记录(EHR)的新工具，以扩大入学人数和 简化临床研究参与者的招聘；3.作为专业资源提供 向非洲裔美国患者及其家人提供有关这些疾病的信息和教育，以及他们的医疗保健 医疗服务提供者、公众、调查人员和其他卫生专业人员、其他CCCRs和政府 机构；4.提供具有良好特征的年代学样本和相关临床数据，以帮助调查人员 识别和了解风险特征差异的潜在生物学原因；5.提供定量的 对CCCR研究社区的指导，同时开发新的生物统计方法并提供 培训学员和初级调查人员的方法学教育发展；以及6.提供具有竞争力的飞行员 为受助者提供方法学支持和指导的项目计划。我们中心的特殊优势包括 杰出的机构承诺，与南加州大学的CTSA建立了牢固的合作伙伴关系，与 以及与美国狼疮基金会和国土安全部少数民族健康办公室的密切合作。

PROJECT SUMMARY We propose a Core Center for Clinical Research at the Medical University of South Carolina entitled Improving Minority Health in Rheumatic Diseases (IMHRD, pronounced I aM HeaRD). Its mission is to advance knowledge with respect to the clinical care and health outcomes of African Americans who have, or who are at risk of developing, systemic lupus erythematosus, scleroderma and other debilitating rheumatic diseases, and thus improve their health. The center builds on a solid framework of strong leadership in Rheumatology, Biostatistics, Public Health Sciences and Health Disparities Research coupled with trust and a proven track record of recruitment of African American patients for clinical research, particularly during the past 4 years in the context of our NIAMS P60-supported MCRC on Rheumatic Diseases in African Americans. The new CCCR will retain and enhance the leadership and unique resources of the MCRC, including 3 cores: Administrative, Methodologic, and Clinical and Community Resource. We seek to impact minority health in rheumatic diseases by: a) providing well phenotyped research samples from minority lupus and scleroderma patients to an increasing pool of investigators at MUSC and elsewhere to define specific mechanisms of rheumatic disease pathogenesis and progression; b) enhancing use of the electronic health record to identify and recruit minority participants in clinical research projects; c) developing novel methodologic methods for clinical and translational studies as well as in studies of gene x gene and gene x environment interactions; and d) strengthening community engagement to enhance awareness of rheumatic diseases and health promotion and increase minority participation in clinical research. Our Center will offer unique resources and methodologies to other investigators and CCCRs. Specific aims are to: 1. Foster translational, clinical and outcomes research centered on African Americans with lupus and scleroderma; 2. Develop novel tools for using the electronic health record (EHR) to expand enrollment and simplify recruitment of participants in clinical research; 3. Serve as a specialized resource for providing information and education about these disorders to African American patients and families, their healthcare providers, the general public, investigators and other health professionals, other CCCRs and government agencies; 4. Provide well-characterized chronologic samples and associated clinical data to help investigators identify and understand underlying biologic reasons for differences in risk profiles; 5. Provide quantitative guidance to the CCCR Research Community while developing novel biostatistical methods and providing methodologic educational development of trainees and junior investigators; and 6. Provide a competitive pilot project program with methodologic support and mentoring for recipients. Special strengths of our center include outstanding institutional commitment, strong partnership with MUSC’s CTSA, a singular culture of trust with the community, and robust collaboration with the Lupus Foundation of America and DHHS Office of Minority Health.