Enhancing the CARRA: Integration and Dissemination of Clinical Data

描述(由申请者提供)：Carra风湿病核心中心(Carra-RDCC)请求为扩大儿童关节炎和风湿病研究联盟(CARA)的临床和翻译研究任务提供资金。CARA的使命是通过促进、促进和开展高质量的研究来预防、治疗和治愈儿童和青少年的风湿病。Carra已经建立了一个由北美各地备受尊敬的儿科风湿病专家组成的联盟，以促进这一使命。CARA-RDCC希望在CARA和CARA参与机构的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病的临床和翻译研究，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出现，这些疾病的潜在治疗方案激增，但仍然缺乏对基本流行病学和病理生理学的了解，以指导治疗。迫切需要1)具有疾病特异性、平行疾病活动性并可预测治疗反应的生物标记物，以及2)更好地了解这些疾病的流行病学和病理生理学基础，从而找到新的治疗选择和治疗方法。这两个需求定义了当前应用程序的目标。该中心将由一个行政核心和三个研究核心组成。研究核心将为CARA研究人员提供从最初的队列(CARA组织存储库核心B(TRC)，主任：Thompson(辛辛那提儿童医院医疗中心))、CARA注册中心的临床数据以及来自其他现有数据库(CARA临床数据和信息核心C(CDIC))的临床数据。主任：尚伯格(杜克大学临床研究所)，副主任：Inman(犹他大学)，Natter(波士顿儿童医院)，以及获得创新研究技术以评估免疫功能(免疫功能和分析核心D(IFC)，主任：梅林斯(斯坦福大学)，副主任：阿尔巴i(桑福德-伯纳姆)。行政核心(主任：尚伯格(杜克临床研究所)，副主任：洛维特(阿尔伯特·爱因斯坦))将协调中心的工作，并提供专注于年轻研究人员的丰富计划。这些部门将共同提供服务和资源，以加快实现中心目标的进程，并促进协作和跨学科互动，从而增强卡拉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.