Biomed Research Core 2

生物医学研究核心 2

• 批准号: 10241467
• 负责人: CHRISTOPHER B FORREST
• 金额: $ 18.55万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-18 至 2022-09-14
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10241467
• 关键词: Address; Adoption; Adult; Affect; Architecture; Caring; Child; Child Health; Childhood; Clinical Data; Clinical Research; Clinical Trials; Clinical effectiveness; Cohort Studies; Collaborations; Communities; Complement; Consensus; Data; Data Element; Data Science; Data Set; Databases; Decision Making; Development; Diagnosis; Effectiveness; Electronic Health Record; Family; Family Practice; Goals; Health; Health system; Healthcare; Human Resources; Individual; Informatics; Infrastructure; Institution; Kidney Diseases; Knowledge; Knowledge Extraction; Leadership; Learning; Mediating; Methodology; Methods; Nephrology; Observational Study; Patients; Pediatric Hospitals; Pediatric Research; Philadelphia; Pragmatic clinical trial; Process; Quality of Care; Recording of previous events; Reporting; Research; Research Personnel; Resources; Services; Site; Specificity; Structure; Translations; Work; catalyst; clinical care; clinical decision-making; clinical encounter; cost; data infrastructure; data resource; design; digital; improved; kidney biopsy; learning network; medical specialties; member; patient engagement; point of care; population health; research and development; routine care; structured data; success; systems research; unstructured data

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.

学习健康系统核心 抽象的 目前的儿科护理过于依赖专家共识或根据有限数据进行推断；存在重大差距 为临床决策提供信息的证据的数量和质量。目前临床研究 实践中产生证据的速度缓慢且成本高昂。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 受影响儿童的信息，并提供充分描述其肾脏特征所需的深度信息 疾病。 PEDSnet 是一个跨八个儿科学术中心的全国性多专业合作项目 通过开发国家数字架构来应对这些挑战，以快速实现学习健康 系统（LHS）涵盖多种儿科疾病。它专注于使用越来越多的经过认证的采用 电子健康记录整合在常规护理环境中进行的研究，捕获结构化数据 临床接触，促进质量改进流程，并增加患者参与改进 儿童健康。迄今为止的成功表明参与机构有意愿和能力扩展 PEDSnet 正式建立儿科肾脏病学学习网络，以解决基本问题 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、 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。具体而言，LHS 核心将实现以下目标，以推进 儿科肾病学习网络： (1) 建立小儿肾病学习网络的组织架构和治理 儿科肾脏病学学习网； (2)扩展PEDSnet资源来构建、维护和调解 访问结构化数据作为新的儿科肾脏病数据库资源的一部分； (3) 发展能力 通过从儿科中提取知识来处理数据库资源中的非结构化数据元素 肾活检报告； (4) 利用新开发的小儿肾病学促进高质量研究 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、诊断和治疗的广泛合作研究 治疗儿童肾脏疾病，提高效率和效果。如果提议的活动 如果成功执行，我们将建立一个组织架构和领导结构，创建 独特有价值的数据资源，并开发了一个功能性基础设施，使跨机构 研究人员在儿科肾病研究常规中进行合作，互动和交流几乎没有障碍 实施务实的临床试验。