Biomed Research Core 2

学习型健康系统核心 摘要 目前的儿科护理过于依赖专家的共识或从有限的数据中推断；存在重大差距 在为临床决策提供信息的证据的数量和质量上。目前的临床研究 实践产生证据的速度很慢，而且成本很高。研究儿童肾脏的关键障碍之一 疾病是指缺乏能够达到足够数量的国家相互联系的多机构基础设施 并提供必要的深入信息，以充分描述他们的肾脏 疾病。创建了一个跨八个儿科学术中心的全国性多专业协作组织--PEDSnet 通过开发国家数字架构来快速实施学习健康，以应对这些挑战 跨多种儿科条件的系统(LHS)。它专注于使用越来越多的经过认证的 电子健康记录，以整合在常规护理环境中进行的研究，捕获结构化数据 临床会诊，促进质量改进过程，并增加患者对改进的参与度 儿童健康。迄今取得的成功表明，参与机构有意愿和能力扩大 PEDSnet工作正式建立儿科肾病学习网络，以解决基本问题 儿童及其家庭的临床有效性问题。我们的应用程序受益于这些强大的预 儿童医院现有的资源和独特的合作历史已经取得了 在建设国家基础设施以加快儿科研究方面取得了巨大进展。专业知识，方法， 由PEDSnet开发的数据基础设施将成为儿科卓越中心的核心 在肾脏学(PCEN)LHS核心。具体地说，LHS核心将解决以下目标，以推进 儿科肾病学习网络：(1)建立儿科肾病学习网络的组织架构和管理 儿科肾病学习网络；(2)扩展PEDS网络资源，用于构建、维护和调解 获取结构化数据，作为新的儿科肾病数据库资源的一部分；(3)发展以下能力 通过儿科知识抽取解决数据库资源中的非结构化数据元素 肾活检报告；以及(4)利用新发展的儿科肾病促进高质量的研究 数据库资源，通过提供共享的技术和方法资源供整个研究使用 发展连续体。实施专门针对患有肾脏疾病的儿童的LHS与 PCEN的总体目标是促进围绕原因、诊断和 治疗儿童肾脏疾病，提高了效率和效果。如果提议的活动 成功执行后，我们将打造一个组织架构和领导架构，创建 独一无二的宝贵数据资源，并开发了一个功能强大的基础设施，使跨机构 在儿科肾病研究常规中，研究人员之间的合作，几乎没有互动和 实施务实临床试验。

LEARNING HEALTH SYSTEM CORE ABSTRACT Current pediatric care relies too much on expert consensus or extrapolation from limited data; major gaps exist in the quantity and quality of evidence that informs clinical decision-making. Clinical research as currently practiced generates evidence slowly and at high cost. One of the critical barriers to studying childhood kidney disease is the lack of a national interconnected, multi-institutional infrastructure able to reach adequate numbers of affected children and provide the depth of information necessary to adequately characterize their kidney disease. PEDSnet, a national multi-specialty collaboration across eight pediatric academic centers, was created to address these challenges by developing a national digital architecture to rapidly implement learning health systems (LHS) across multiple pediatric conditions. It has focused on using the increasing adoption of certified electronic health records to integrate research performed in routine care settings, capture structured data at clinical encounters, promote quality improvement processes, and increase patient engagement in improving child health. Successes to date demonstrate both the will and capacity of participating institutions to extend the work of PEDSnet to formally establish a Pediatric Nephrology Learning Network in order to address fundamental questions of clinical effectiveness for children and their families. Our application benefits from these robust pre- existing resources and a unique history of collaboration by children’s hospitals that has already made tremendous progress in building a national infrastructure to expedite pediatric research. The expertise, methods, and data infrastructure developed by PEDSnet will serve as the centerpiece of the Pediatric Center of Excellence in Nephrology (PCEN) LHS Core. Specifically, the LHS Core will address the following aims in order to advance the Pediatric Nephrology Learning Network: (1) Establish the organizational architecture and governance of the Pediatric Nephrology Learning Network; (2) Extend PEDSnet resources to construct, maintain, and mediate access to structured data as part of a new Pediatric Nephrology Database Resource; (3) Develop capacity to address unstructured data elements in the Database Resource through knowledge extraction from pediatric kidney biopsy reports; and (4) Stimulate high quality research using the newly developed Pediatric Nephrology Database Resource, by providing shared technical and methodological resources for use across the research development continuum. Implementing a LHS dedicated to children with kidney disease closely aligns with the overall goal of the PCEN to facilitate extensive collaborative research around the causes, diagnoses, and treatment of kidney diseases in children, with increased efficiency and effectiveness. If the proposed activities are successfully executed, we will have forged an organizational architecture and leadership structure, created a uniquely valuable data resource, and developed a functional infrastructure that makes cross-institutional collaboration amongst investigators in pediatric nephrology research routine, with few barriers to interaction and implementation of pragmatic clinical trials.