Resource Core

项目总结

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.