MCRC for Rheumatic Diseases in African Americans

南卡罗来纳医科大学这个多学科临床研究中心的目标是促进对患有系统性红斑狼疮、系统性硬化症和其他使人衰弱的风湿性疾病或有发展风险的非裔美国人的了解。该中心建立在风湿学、生物统计学和健康差异研究领域的强大领导地位以及信任和招募非洲裔美国人患者进行临床研究的可靠记录的坚实框架之上。该中心的目标是：1)开展和促进转化性临床研究，改进诊断和管理，最终减少或消除与非裔美国人的风湿性疾病有关的健康差距；2)专注于确定和了解非裔美国人风险特征和疾病进展差异的根本原因；3)向患者和家庭、医疗保健提供者、普通公众、研究人员和其他学术健康中心和政府机构的健康专业人员提供信息和教育。 我们提出了两个由三个核心支持的创新、高影响力的项目。项目1将调查在非裔美国人SSc患者中观察到的一种基因变异，该变异可能是导致他们更严重的肺纤维化的原因。考虑到这些患者的发病率和死亡率，特别是与肺部疾病有关的发病率和死亡率，这一点非常重要。项目2解决了另一个重大的健康差距，即非裔美国妇女中红斑狼疮的患病率不断上升。南卡罗来纳州的海岛古拉人和生活在塞拉利昂古拉祖籍的个人提供了一个新的机会来研究基因、环境和表观遗传差异，这些差异可能确定与非裔美国人系统性红斑狼疮发展相关的关键因素。这两个项目和未来的试点项目将由三个核心提供服务：(1)方法学核心将提供严格的方法学和生物统计学支持；(2)患者资源核心将确保研究人员获得SSC和非裔美国人丰富的系统性红斑狼疮患者的患者和生物样本；(3)行政核心将通过规划、开发、协调和整体管理协调中心的工作。通过强有力的机构支持和强有力的试点项目计划的持续承诺，MCRC将吸引和培养对少数民族健康和风湿病有研究兴趣的年轻研究人员。

The objective of this Multidisciplinary Clinical Research Center at the Medical University of South Carolina is the advancement of knowledge with respect to African Americans who have, or who are at risk of developing, systemic lupus erythematosus, systemic sclerosis, and other debilitating rheumatic diseases. The Center is built on a solid framework of strong leadership in Rheumatology, Biostatistics and Health Disparities Research coupled with trust and a proven track record of recruitment of African American patients for clinical research. Objectives of the Center are to: 1) conduct and foster translational clinical research leading to improved diagnosis, management and ultimately a reduction or elimination of health disparities with respect to debilitating rheumatic diseases in African Americans; 2) focus on identifying and understanding the underlying reasons for differences in risk profiles and disease progression for African Americans; 3) provide information and education to patients and families, healthcare providers, the general public, investigators and health professionals at other academic health centers and government agencies. We propose two innovative, high impact projects supported by three cores. Project 1 will investigate a genetic variant observed in African American SSc patients likely to be responsible for their higher severity of pulmonary fibrosis. This is highly significant given the morbidity and mortality rates, especially related to lung disease, in these patients. Project 2 addresses another significant health disparity, the increasing prevalence of lupus among African American women. The Sea Island Gullah people of South Carolina and individuals living in the Gullah ancestral home of Sierra Leone provide a novel opportunity to study genetic, environmental and epigenetic differences that might identify key factors associated with the development of SLE in African Americans. These two projects and future pilot projects will be served by three cores: (1) a Methodology Core will provide rigorous methodological and biostatistical support; (2) a Patient Resource Core will assure investigators access to patients and biological samples from SSc and SLE patients enriched with African Americans; (3) an Administrative Core will coordinate the work of the Center through planning, development, coordination and overall administration. With a sustained commitment of strong institutional support and through a robust pilot project program, this MCRC will attract and nurture young investigators with research interests in minority health and rheumatic diseases.