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资助的强大基础上 MCRC患者资源核心和随后由P30资助的临床和社区资源(CCR)核心。 自2012年以来，这些核心已为当地、国家、国际和企业基础提供了 以黑人为主的系统性红斑狼疮和系统性红斑狼疮的表型纵向队列 硬化症(SSC)患者和配对的对照组和家庭成员数据和银行生物样本。这个 CCR核心的改进加速了不断扩大的基础中的研究，通过提供良好的 表型标本和数据。最近对研究基础的一项正式调查表明，仍有强烈的持续需求 用于现有服务，但在关键领域扩大服务。拟议的目标将继续奠定基础 由目前的CCCR基础设施以严格和透明的方式提供。然而，续订的 临床和社区资源核心(CCR Core)将通过以下方式灵活扩展服务：1)增强信息学 用于远程同意和调查完成、招聘、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，将活体生物库方法纳入及时样本 在任何临床实验室以及全州的MUSC卫生站收集。重要的是，我们 也与外行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， 提高招生人数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。核心的具体目标是：1)维护和扩大CCR 具有新的EHR、数据集市和报告基础设施的核心，以提供良好的表型、纵向队列 SLE和SSC受试者以及匹配的对照志愿者，以支持研究的当前和未来需求 基地。2)使用新的EHR和Living Biobank基础设施维护和扩展CCR核心，以有效地 提供良好的表型、储存和新鲜的生物标本，包括纵向和纵向以外的标本 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 以及SSC和调查人员。我们会促进社区成员和组织参与 每一步的研究过程，从项目规划到传播和健康促进。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。这些项目的总体目标是 目标是响应地扩展核心的服务，以满足研究基地的需求。带着一个 将实施扩大基础、严格项目管理和质量控制报告和回应 并得到了维护。没有其他资源可以提供这一独特种群的优良表型数据和样本 病人。由核心推动的社区参与可以增加所进行研究的相关性 通过该基地以及将其翻译到具有已知健康差异的SLE和SSC患者社区。