Improving Minority Health in Rheumatic Diseases

改善少数民族风湿病健康

• 批准号: 10254241
• 负责人: Gary S Gilkeson
• 金额: $ 70.51万
• 依托单位: MEDICAL UNIVERSITY OF SOUTH CAROLINA
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-25 至 2022-09-22
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10254241
• 关键词: ARHGEF5 gene; Address; African American; Americas; Autoimmune; Avena sativa; Award; Awareness; Big Data; Biological; Biometry; Biostatistical Methods; Chronology; Clinical; Clinical Data; Clinical Research; Clinical Research Associate; Collaborations; Communities; Connective Tissue Diseases; Coupled; Data; Development; Diagnosis; Disease; Disease Progression; Education; Electronic Health Record; Enrollment; Family; Fostering; Foundations; Funding; General Population; Genes; Goals; Government Agencies; Grant; Health; Health Personnel; Health Professional; Health Promotion; Health Sciences; Hearing; Individual; Knowledge; Leadership; Link; Lupus; Medical; Mentors; Methodology; Methods; Minority; Minority Participation; Minority Recruitment; Mission; Morbidity - disease rate; National Institute of Arthritis and Musculoskeletal and Skin Diseases; Online Systems; Outcome; Outcomes Research; Participant; Pathogenesis; Patient Recruitments; Patients; Peer Review; Persons; Phenotype; Pilot Projects; Public Health; Reporting; Research; Research Design; Research Personnel; Research Project Grants; Resources; Rheumatism; Rheumatology; Risk; Sampling; Scleroderma; Silver; Solid; South Carolina; Systemic Lupus Erythematosus; Systemic Scleroderma; Translational Research; Trust; Universities; Wolves; Woman; base; biobank; clinical care; clinical center; community engagement; cost; gene environment interaction; health disparity; high risk; improved; innovation; meetings; minority disparity; minority health; mortality; novel; patient portal; programs; recruit; research data dissemination; sample collection; success; tool; translational study

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.

项目摘要 我们建议在南卡罗来纳州医科大学建立一个临床研究核心中心， 少数民族健康风湿病（IMHRD，发音为I aM HeRD）。它的使命是增进知识 关于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性疾病， 改善他们的健康。该中心建立在流变学，生物统计学， 公共卫生科学和健康差异研究加上信任和良好的跟踪记录， 招募非裔美国患者进行临床研究，特别是在过去4年中， 我们的NIAMS P60支持的非裔美国人风湿性疾病MCRC。新的CCCR将保留 并加强MCRC的领导和独特资源，包括3个核心：行政，方法， 临床和社区资源。我们寻求通过以下方式影响风湿性疾病中的少数群体健康：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确定风湿性疾病发病机制的具体机制， B）加强使用电子健康记录，以确定和招募少数参与者， 研究项目; c）开发用于临床和转化研究以及 基因x基因和基因x环境相互作用的研究;以及d）加强社区参与， 提高对风湿病和健康促进的认识，增加少数民族参与临床 research.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。具体 目标是：1.促进以患有狼疮的非裔美国人为中心的转化，临床和结果研究 和硬皮病; 2.开发新的工具，使用电子健康记录（EHR）来扩大注册， 简化临床研究参与者的招募; 3.作为一个专门的资源， 向非裔美国人患者和家庭提供有关这些疾病的信息和教育， 提供者、公众、研究者和其他卫生专业人员、其他CCCR和政府 机构; 4.提供良好表征的时序样本和相关临床数据，以帮助研究者 识别和理解风险特征差异的潜在生物学原因; 5.提供定量 指导CCCR研究社区，同时开发新的生物统计方法， 受训人员和初级研究人员的方法学教育发展; 6.提供有竞争力的试点 项目方案，为受援者提供方法上的支持和指导。我们中心的特殊优势包括 杰出的机构承诺，与MUSC的CTSA建立了强有力的合作伙伴关系， 社区，并与美国狼疮基金会和DHHS少数民族健康办公室的大力合作。