Improving Minority Health in Rheumatic Disease (IMHeaRD)

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 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，这些核心已服务于当地，国家，国际和企业基地，提供良好的 主要为黑人的系统性红斑狼疮（SLE）和系统性红斑狼疮（SLE）的表型纵向队列 硬化症（SSc）患者和匹配的对照和家庭成员数据以及库存的生物样品。的 改进的CCR核心加速了研究中不断扩大的基础，提供良好的 表型标本和数据。最近对研究基地的一项正式调查表明， 现有的服务，但在关键领域扩大服务。拟议的目标将继续基础 由当前CCCR基础设施以严格和透明的方式提供。然而，更新的 临床和社区资源核心（CCR核心）将通过以下方式灵活扩展服务：1）加强信息化 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，包括采用活体生物库方法及时采集标本 在任何临床实验室以及全州的MUSC Health站点收集。重要的是我们 也与社区建立了良好的关系。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。该核心的具体目标是：1）维持和扩大共同核心区 核心与新的EHR，数据集市，和报告基础设施，以提供一个良好的表型，纵向队列， SLE和SSc受试者和匹配的对照志愿者，以支持研究的当前和未来需求 基地2)通过新的EHR和Living BioBank基础设施维护和扩展CCR核心， 提供良好的表型，库存和新鲜的生物标本，无论是从内部和外部的纵向 根据研究基地的需要，进行队列研究。3)提供资源以联系受SLE影响的社区 以及SSc和调查人员。我们将促进社区成员和组织参与 从项目规划到传播和促进健康，在研究过程的每一步都有一个共同的目标。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。这些活动的总体目标 其目的是响应性地扩大核心的服务，以满足研究基地的需求。与 将扩大基础，实施严格的项目管理和质量控制报告及应对措施 并保持。没有其他资源可以提供优良的表型数据和样本，从这个独特的人口， 患者核心促进的社区参与可以增加所进行研究的相关性 由基地以及其翻译到一个社区的SLE和SSc患者与已知的健康差距。

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.