Improving Minority Health in Rheumatic Diseases

点击翻译按钮获取中文摘要

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.