Improving Minority Health in Rheumatic Disease (IMHeaRD)

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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.