Improving Minority Health in Rheumatic Disease (IMHeaRD)

改善少数民族风湿病健康 (IMHeaRD)

• 批准号: 10488451
• 负责人: JAMES C OATES
• 金额: $ 75.09万
• 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 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10488451
• 关键词: ARHGEF5 gene; Address; African American population; Americas; Avena sativa; Award; Awareness; Big Data; Biological; Biometry; Biostatistical Methods; Black race; Chronology; Clinical; Clinical Data; Clinical Research; Collaborations; Communities; Coupled; Data; Data Mart; Development; Diagnosis; Disease; Disease Progression; Education; Electronic Health Record; Enrollment; Family; Fostering; Foundations; Frequencies; Funding; General Population; Genes; Goals; Government Agencies; Health; Health Disparities Research; 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; Phenotype; Pilot Projects; Provider; Public Health; Reduce health disparities; Reporting; Research; Research Design; Research Personnel; Research Project Grants; Resources; Rheumatism; Rheumatology; Risk; Sampling; Scleroderma; Solid; South Carolina; Systemic Lupus Erythematosus; Systemic Scleroderma; Translational Research; Trust; Universities; Wolves; Woman; base; biobank; black patient; clinical care; clinical center; clinical phenotype; community engagement; gene environment interaction; health data; health disparity; high risk; improve minority health; improved; innovation; meetings; minority engagement; minority health; minority patient; mortality; novel; patient portal; programs; ranpirnase; recruit; research data dissemination; sample collection; success; synergism; tool; translational study

Project Summary - Overall We wish to renew our Core Center for Clinical Research at the Medical University of South Carolina entitled Improving Minority Health in Rheumatic Diseases (IMHeaRD or IMHRD, pronounced I aM HeaRD). Its mission is to advance knowledge in clinical care and health outcomes of minority patients who have, or who are at risk of developing, systemic lupus erythematosus, scleroderma and other debilitating rheumatic diseases. 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 Black patients for clinical research, particularly during the past four years, building on the success of our NIAMS P60 MCRC on Rheumatic Diseases in African Americans. IMHeaRD will retain and enhance the leadership and unique resources, including three 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 (EHR) to identify and recruit minority participants in clinical research projects; c) developing novel methods for clinical and translational studies and 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 methods to other investigators and CCCRs. Specific aims are to: 1. Foster translational, clinical and outcomes research centered on Black patients with lupus and scleroderma; 2. Develop novel tools for using the 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 Black 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. Deliver quantitative guidance to the CCCR Research Community while developing novel biostatistical methods and providing methodologic educational development of trainees and junior investigators ; and 6. Offer a robust 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--总体 我们希望更新我们在南卡罗来纳医科大学的核心临床研究中心，名为 改善风湿性疾病中的少数民族健康(发音为I Are)。它的使命是 是增进对患有或处于危险中的少数族裔患者的临床护理和健康结果的了解 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。中心 建立在风湿学、生物统计学、公共卫生科学和卫生领域强有力领导的坚实框架之上 差异研究与信任，以及招募黑人患者用于临床的可靠记录 研究，特别是在过去四年中，建立在我们的NIAMS P60 MCRC关于风湿病的成功的基础上 非裔美国人的疾病。IMHeaRD将保留和加强领导力和独特资源，包括 三个核心：管理、方法、临床和社区资源。我们寻求影响少数群体 风湿病的健康：a)提供少数民族狼疮的良好表型研究样本和 硬皮病患者到MUSC和其他地方越来越多的研究人员那里，以确定特定的 风湿病发病和发展的机制；b)加强电子健康的使用 记录(EHR)以确定和招募临床研究项目中的少数参与者；c)开发新的 X基因与x基因环境互作的临床和翻译研究方法； 和d)加强社区参与，提高对风湿病和健康的认识 促进和增加少数人参与临床研究。我们的中心将提供独特的资源和 方法提供给其他研究人员和CCCR。具体目标是：1.促进翻译、临床和结果 以患有狼疮和硬皮病的黑人患者为中心的研究；2.开发使用电子病历的新工具 扩大招生规模，简化临床研究参与者招募；3.作为专业资源 为黑人患者和家庭提供关于这些疾病的信息和教育，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.提供量化 对CCCR研究社区的指导，同时开发新的生物统计方法并提供 对受训人员和初级调查人员进行方法学教育发展；以及6.提供强有力的试点项目 为受助者提供方法学支持和指导的计划。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。