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.

学习卫生系统核心 抽象的 当前的小儿护理过于依赖专家共识或从有限数据中推断出来。存在主要差距 以告知临床决策的证据的数量和质量。目前的临床研究 实际产生的证据缓慢而高昂。研究童年肾脏的关键障碍之一 疾病是缺乏国家相互联系的多机构基础设施来达到足够数量的 受影响的儿童，并提供充分描述孩子所必需的信息的深度 疾病。 PEDSNET是跨八个儿科学术中心的全国多专科合作 通过开发国家数字体系结构来快速实施学习健康，以应对这些挑战 多种儿科条件的系统（LHS）。它的重点是使用越来越多的认证采用 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 临床相遇，促进质量改进过程并增加患者参与度 儿童健康。迄今为止的成功表明了参与机构扩展的意愿和能力 PEDSNet正式建立儿科肾脏学学习网络的工作，以解决基本 对儿童及其家人的临床有效性问题。我们的申请受益于这些强大的前 现有资源和儿童医院的独特合作历史 在建立国家基础设施以加快儿科研究的巨大进展。专业知识，方法， PEDSNET开发的数据基础设施将成为小儿卓越中心的核心 在肾脏科（PCEN）LHS核心中。具体而言，LHS核心将解决以下目标以促进 小儿肾脏学学习网络：（1）建立组织结构和治理 小儿肾脏学习网络； （2）扩展PEDSNet资源以构建，维护和调解 作为新的儿科肾脏病数据库资源的一部分，访问结构化数据； （3）发展能力 通过从小儿提取知识来解决数据库资源中的非结构化数据元素 肾脏活检报告； （4）使用新开发的儿科肾脏刺激高质量研究 数据库资源，通过提供共享的技术和方法论资源供整个研究中使用 发展连续性。实施专门针对肾脏疾病儿童的LHS与 PCEN的总体目标促进有关原因，诊断和 效率和有效性提高的儿童肾脏疾病的治疗。如果提议的活动 已成功执行，我们将忘记组织结构和领导结构，创建 一种独特的宝贵数据资源，并开发了一种功能基础架构，该基础架构使跨机构 小儿肾脏病研究常规研究人员之间的合作，相互作用的障碍很少 实施务实的临床试验。