Enhancing the CARRA: Integration and Dissemination of Clinical Data

描述（由申请人提供）：CARRA风湿病核心中心（CARRA- rdcc）申请资金用于扩大儿童关节炎和风湿病研究联盟（CARRA）的临床和转化研究任务。CARRA的使命是通过培养、促进和开展高质量的研究，预防、治疗和治愈儿童和青少年的风湿病。CARRA在北美建立了一个备受尊敬的儿科风湿病学家联盟，以促进这一使命。CARRA- rdcc希望在CARRA和CARRA参与机构现有基础设施的基础上，促进将最先进的技术应用于儿童风湿性疾病的临床和转化研究，重点是青少年特发性关节炎、系统性红斑狼疮、青少年皮肌炎和局限性硬皮病。尽管随着多种生物制剂的可用性，这些疾病的潜在治疗选择激增，但仍然缺乏对基本流行病学和病理生理学的理解来指导治疗。目前迫切需要1)疾病特异性、平行疾病活动和预测治疗反应的生物标志物，2)更好地了解这些疾病的流行病学和病理生理基础，从而产生新的治疗选择和治愈方法。这两个需求定义了当前应用程序的目标。CARRA-RDCC将由一个行政核心和三个研究核心组成。研究核心将为CARRA研究人员提供从初始队列(CARRA组织库核心B （TRC)，主任：Thompson（辛辛那提儿童医院医疗中心））获得的生物标本，CARRA注册中心的临床数据以及其他现有数据库（CARRA临床数据与信息学核心C (CDIC)）的临床数据。主任：Schanberg（杜克临床研究所），副主任：Inman（犹他大学），Natter（波士顿儿童医院）)，以及获得评估免疫功能的创新研究技术(免疫功能与分析核心D (IFC)，主任：Mellins（斯坦福大学），副主任：Albani（斯坦福-伯纳姆大学）。行政核心(主任：Schanberg（杜克临床研究所），副主任：llowite（阿尔伯特·爱因斯坦）将协调中心的工作，并提供一个专注于年轻研究人员的丰富计划。这些组成部分将共同提供服务和资源，以加速中心目标的进展，并促进合作和跨学科的互动，从而提高CARRA儿科风湿病研究基地的研究能力。

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.