Improving Minority Health in Rheumatic Disease (IMHeaRD)

改善少数民族风湿病健康 (IMHeaRD)

• 批准号: 10488454
• 负责人: JAMES C OATES
• 金额: $ 32.78万
• 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/10488454
• 关键词: ARHGEF5 gene; Achievement; Address; Area; Autoimmunity; Biological; Biological Markers; Biological Specimen Banks; Biopsy; Black race; Budgets; Clinic; Clinical; Clinical Research; Collaborations; Collection; Communities; Consultations; Data; Data Analyses; Data Mart; Electronic Health Record; Enrollment; Epigenetic Process; Faculty; Family member; Fibrosis; Foundations; Funding; Future; Genetic; Genetic Markers; Goals; Health; Health Promotion; Hormones; Human Resources; Immunology; Industry Collaboration; Informatics; Infrastructure; International; Knowledge; Laboratories; Link; Longitudinal cohort; Lupus; Methodology; Methods; Pathway interactions; Patient Recruitments; Patients; Peripheral Blood Mononuclear Cell; Phenotype; Pilot Projects; Population; Process; Productivity; Quality Control; Reporting; Research; Research Design; Research Personnel; Research Project Grants; Research Support; Resources; Rheumatism; Rheumatology; Sampling; Scleroderma; Services; Site; Skin; Solid; Specimen; Surveys; Systemic Lupus Erythematosus; Systemic Scleroderma; Targeted Research; Text; Time; Translational Research; Translations; Visit; Work; anticancer research; base; biobank; cancer immunotherapy; clinical care; community engagement; community partnership; data repository; demographics; experience; flexibility; health disparity; health record; improve minority health; improved; informatics infrastructure; lipidomics; member; microbiome; novel; outreach clinics; patient population; phenotypic data; ranpirnase; recruit; remote consent; response; sample collection; social determinants; volunteer

Project Summary – Clinical and Community Resource Core The Clinical and Community Resource Core will build on the strong foundation established by the P60-funded MCRC Patient Resource Core and the subsequent P30-funded Clinical and Community Resource (CCR) Core. Since 2012 these cores have served a local, national, international, and corporate base by providing a well phenotyped longitudinal cohort of predominantly Black systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) patients and matched control and family member data and banked biological samples. The improvements of the CCR Core have accelerated research among the expanding base by providing well phenotyped specimens and data. A recent formal survey of the research base indicated a strong ongoing need for existing services but expansion of services in critical areas. The proposed aims will continue the foundation provided by the current CCCR infrastructure in a rigorous and transparent fashion. However, the renewed Clinical and Community Resource Core (CCR Core) will flexibly expand services by 1) enhancing the informatics infrastructure for remote consenting and survey completion, recruiting, health record data and text capture, and reporting and 2) broadening sample collection to include a Living Biobank approach to just in time specimen collection at any clinical laboratory encounter as well as MUSC Health sites across the state. Importantly, we also have built strong relationships with the lay community. Because this community can inform research design, improve enrollment and benefit from the knowledge of core personnel, the new CCR Core will continue community engagement consultation services. The core’s specific aims are to: 1) Maintain and expand the CCR Core with novel EHR, data mart, and reporting infrastructure to provide a well phenotyped, longitudinal cohort of SLE and SSc subjects and matched control volunteers to support the current and future needs of the research base. 2) Maintain and expand the CCR Core with novel EHR and Living BioBank infrastructure to efficiently provide well phenotyped, banked and fresh biological specimens, both from within and beyond the longitudinal cohort, based on the needs of the research base. 3) Provide resources to link communities impacted by SLE and SSc and investigators. We will facilitate the engagement of community members and organizations into the research process at every step, from project planning to dissemination and health promotion. 4) Provide consultative & regulatory support to current and future projects of the research base. The overall goal of these aims is to responsively expand the services of the Core to meet the needs of the research base. With an expanding base, rigorous project management and quality control reporting and responses will be implemented and maintained. No other resource can provide fine phenotype data and samples from this unique population of patients. The community engagement facilitated by the core can increase the relevance of research performed by the base as well as its translation to a community of SLE and SSc patients with known health disparities.

项目摘要 - 临床和社区资源核心 临床和社区资源核心将建立在 P60 资助的坚实基础之上 MCRC 患者资源核心和随后的 P30 资助的临床和社区资源 (CCR) 核心。 自 2012 年以来，这些核心通过提供良好的服务，服务于当地、国家、国际和企业基础。 以黑人为主的系统性红斑狼疮 (SLE) 和系统性红斑狼疮的表型纵向队列 硬化症（SSc）患者以及匹配的对照和家庭成员数据以及存储的生物样本。 CCR 核心的改进通过提供良好的条件加速了不断扩大的基础中的研究 最近对研究基地的一项正式调查表明，存在强烈的持续需求。 拟议的目标将继续为现有服务提供基础服务，但扩大关键领域的服务。 然而，当前的 CCCR 基础设施以严格和透明的方式提供。 临床和社区资源核心（CCR 核心）将通过 1）增强信息学来灵活扩展服务 用于远程同意和调查完成、招募、健康记录数据和文本捕获的基础设施，以及 报告和 2) 扩大样本收集范围，将活生物库方法纳入及时样本 重要的是，我们在任何临床实验室以及全州 MUSC 健康中心进行收集。 还与非专业社区建立了牢固的关系，因为这个社区可以为研究设计提供信息， 提高入学率并受益于核心人员的知识，新的 CCR 核心将继续 社区参与咨询服务的核心目标是： 1) 维护和扩大 CCR。 以新颖的 EHR、数据集市和报告基础设施为核心，提供表型良好的纵向队列 SLE 和 SSc 受试者以及匹配的对照志愿者，以支持当前和未来的研究需求 2) 通过新颖的 EHR 和生物库基础设施维护和扩展 CCR 核心，以高效地进行维护和扩展。 提供表型良好、库存充足且新鲜的生物标本，无论是来自纵向内部还是外部 队列，根据研究基地的需要 3) 提供资源，将受 SLE 影响的社区联系起来。 我们将促进社区成员和组织参与该项目。 从项目规划到传播和健康促进的每一步研究过程 4) 提供。 为研究基地当前和未来的项目提供咨询和监管支持。 目标是迅速扩展核心的服务，以满足研究基地的需求。 将实施严格的项目管理并扩大质量控制报告和响应 没有其他资源可以提供来自这个独特种群的精细表型数据和样本。 核心促进的社区参与可以提高所进行研究的相关性。 基地及其向已知健康差异的 SLE 和 SSc 患者社区的翻译。