Resource Core

项目摘要 临床和社区资源核心将建立在MCRC患者建立的坚实基础上 在过去的4年里，MUSC的资源核心。自2012年以来，这一核心已服务于地方，国家，国际， 通过提供一个以非洲裔美国人为主的良好表型纵向队列， 系统性红斑狼疮（SLE）和系统性硬化症（SSc）患者和匹配的对照数据， 储存的生物样本最近对研究基地的一项正式调查表明， MCRC基础设施。首先，研究人员需要对特定的患者进行更密集的纵向随访， 疾病亚表型，如硬皮病、间质性肺病和狼疮性肾炎。二、新鲜 需要生物样本如外周血单核细胞和皮肤活检， 库存标本第三，需要额外的协调员支持，以促进有效收集新鲜的 样本并协助满足监管要求。最后，翻译科学家和初级研究人员 需要就社区参与、疾病特异性研究设计和数据进行咨询 解释，建议可行性分析，以及灵活调整核心服务的方法， 需求临床及社区资源中心（CCR Core）将灵活地扩展服务， 能够在病历中更精细地对患者进行表型分析，以便有效地招募患者进行研究 并且在预定的临床访问期间更严格地遵循纵向队列。自动报告特定 SLE和SSc表型将有助于更有效地远程订购生物标本。这种自动化 将使我们能够重新调整协调员资源，以增加MCRC覆盖的诊所就诊百分比 满足研究基地的要求。核心的具体目标是：1）保持和灵活扩大 CCR核心与新型电子健康记录（EHR）基础设施，以提供良好的表型，纵向 SLE和SSc受试者和匹配的对照志愿者队列，以支持当前和未来的需求。 2）维护和灵活扩展CCR核心与新的EHR基础设施，以有效地提供 良好的表型，库存和新鲜的生物标本，无论是从内部和外部现有的纵向 队列，基于研究基地的持续和预测的未来需求; 3）提供资源， 受SSc和SLE影响的社区和研究人员在研究过程中，从项目规划， 通过与社区成员、社区组织和 患者倡导团体;以及4）为当前和未来的项目提供咨询和监管支持。 研究基地。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 The Clinical and Community Resource Core will build on the strong foundation established by the MCRC Patient Resource Core at MUSC during the past 4 years. Since 2012 this core has served a local, national, international, and corporate base by providing a well phenotyped longitudinal cohort of predominantly African-American systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) patients and matched control data and banked biological samples. A recent formal survey of the research base indicated that needs are now exceeding the MCRC infrastructure. First, investigators need more intensive longitudinal follow-up of patients with specific disease sub-phenotypes such as scleroderma interstitial lung disease and lupus nephritis. Second, fresh biological specimens such as peripheral blood mononuclear cells and skin biopsies are needed in addition to banked specimens. Third, additional coordinator support is needed to facilitate efficient collection of fresh specimens and assist with regulatory requirements. Finally, translational scientists and junior investigators require consultation about engagement with the community, disease-specific study design and data interpretation, proposal feasibility analysis, and methods for flexibly adapting the services of the core to their needs. The Clinical and Community Resource Core (CCR Core) will flexibly expand on the services by providing the ability to more finely phenotype patients in the medical record in order to efficiently recruit patients for studies and more rigorously follow the longitudinal cohort during scheduled clinical visits. Automated reporting of specific SLE and SSc phenotypes will facilitate more efficient remote ordering of biological specimens. This automation will enable us to refocus coordinator resources to increase the percentage of clinic visits covered by the MCRC and fulfill requests by the research base. The core’s specific aims are to: 1) Maintain and flexibly expand the CCR Core with novel electronic health record (EHR) 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 flexibly expand the CCR Core with novel EHR infrastructure to efficiently provide well phenotyped, banked and fresh biological specimens, both from within and beyond the existing longitudinal cohort, based on the ongoing and projected future needs of the research base; 3) Provide resources to link communities impacted by SSc and SLE and investigators in the research process, from project planning to dissemination and health promotion, by engaging with community members, community organizations and patient advocacy groups; and 4) Provide consultative and regulatory support to current and future projects of the research base. 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.