Enhancing the CARRA: Integration and Dissemination of Clinical Data

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DESCRIPTION (provided by applicant): The CARRA Rheumatic Diseases Core Center (CARRA-RDCC) requests funding for expansion of the clinical and translational research mission of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). CARRA's mission is to prevent, treat and cure rheumatic diseases in children and adolescents through fostering, facilitating and conducting high quality research. CARRA has established a consortium of highly respected pediatric rheumatologist across North America to foster that mission. The CARRA-RDCC looks to build upon existing infrastructure within CARRA and CARRA participating institutions to facilitate the application of state of the art technologies to clinical and translational research in childhood rheumatic disease, focusing on juvenile idiopathic arthritis, systemic lupus erythematosus, juvenile dermatomyositis and localized scleroderma. Despite the explosion in potential therapeutic options for these diseases with the availability of multiple biologic agents, there continues to be a lack of understanding of basic epidemiology and pathophysiology to guide treatment. There exists a compelling need for 1) biomarkers that are disease specific, parallel disease activity, and predict response to therapy, and 2) a better understanding of the epidemiologic and pathophysiologic basis of these diseases that can lead to new therapeutic options and cure. These two needs define the goals of the current application. The CARRA-RDCC will consist of one Administrative Core and three Research Cores. The Research Cores will provide CARRA investigators with access to biospecimens from an inception cohort (CARRA Tissue Repository Core B (TRC), Director: Thompson (Cincinnati Children's Hospital Medical Center)),clinical data from the CARRA Registry as well as clinical data from other existing databases (CARRA Clinical Data & Informatics Core C (CDIC). Director: Schanberg (Duke Clinical Research Institute), Associate Directors: Inman (University of Utah), Natter (Boston's Children's Hospital)), and access to innovative research technologies to assess immune function (Immune Function & Analysis Core D (IFC), Director: Mellins (Stanford University), Associate Director: Albani (Sanford-Burnham). The Administrative Core (Director: Schanberg (Duke Clinical Research Institute), Associate Director: llowite (Albert Einstein) will coordinate the Center's efforts and provide an enrichment program focused on young investigators. Together, these components will provide services and resources to accelerate progress toward the goals of the center as well as foster collaborations and interdisciplinary interactions which enhance research capabilities of the CARRA pediatric rheumatology research base.