Biomed Research Core 2

学习卫生系统核心 摘要 目前的儿科护理过于依赖专家共识或从有限数据中推断;存在重大差距 在数量和质量的证据，通知临床决策。目前临床研究 实践产生证据的速度慢，成本高。研究儿童肾脏的关键障碍之一 疾病是缺乏能够覆盖足够数量的国家互联、多机构基础设施 并提供充分表征其肾脏所需的深度信息 疾病创建了PEDSnet，这是一个跨越八个儿科学术中心的国家多专业合作， 通过开发国家数字架构来应对这些挑战，以快速实施学习健康 系统（LHS）在多种儿科条件。它专注于使用越来越多的认证 电子健康记录，以整合在常规护理环境中进行的研究， 临床接触，促进质量改进过程，并增加患者参与改善 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的工作，正式建立儿科肾病学习网络，以解决基本的 对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- 现有的资源和儿童医院独特的合作历史， 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 肾脏病学（PCEN）LHS核心。具体来说，LHS核心将实现以下目标，以推进 小儿肾脏病学学习网络：（1）建立组织架构和管理， 儿科肾脏学学习网络;（2）扩展PEDSnet资源，以构建、维护和调解 访问结构化数据，作为新的儿科肾病数据库资源的一部分;（3）发展以下能力： 通过儿科知识提取，解决数据库资源中的非结构化数据元素 肾活检报告;（4）使用新开发的儿科肾病学刺激高质量的研究 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。实施专门针对肾病儿童的LHS与 PCEN的总体目标是促进围绕病因、诊断和 治疗儿童肾脏疾病，提高效率和效果。如果提议的活动 成功执行，我们将建立一个组织架构和领导结构， 一个独特的有价值的数据资源，并开发了一个功能基础设施，使跨机构 研究者之间在儿科肾病研究常规中的合作，很少有互动障碍， 开展务实的临床试验。

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.