Archiving Common Data Element-Harmonized Pediatric Traumatic Brain Injury Data and Metadata

归档通用数据元素 - 协调的儿科创伤性脑损伤数据和元数据

• 批准号: 9789058
• 负责人: Tellen Bennett
• 金额: $ 7.78万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-20 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9789058
• 关键词: Accident and Emergency department; Acute; Archives; Caring; Cause of Death; Cessation of life; Characteristics; Child; Childhood; Code; Cognitive; Collaborations; Common Data Element; Computer software; Critical Care; Critical Illness; Data; Data Analyses; Data Set; Department of Defense; Deposition; Development; Documentation; Enrollment; Environment; Event; Family; Goals; Gold; Hospitalization; Hospitals; Image; Informatics; Injury; Intensive Care Units; Intervention; Knowledge; Laboratories; Mental Health; Metadata; Mission; National Institute of Child Health and Human Development; Outcome Measure; Patients; Phase; Prospective cohort study; Public Health; Quality of life; Rehabilitation therapy; Reporting; Research; Research Priority; Secondary to; Site; Source; Structure; Sulfur; System; Traumatic Brain Injury; United States National Institutes of Health; Validation; data archive; data integration; data sharing; data warehouse; disability; functional status; improved outcome; injured children; innovation; mortality; open source; pediatric trauma; pediatric traumatic brain injury; prospective; repository; secondary analysis; trauma centers

PROJECT SUMMARY/ABSTRACT Traumatic brain injury (TBI) is the leading cause of death and acquired disability in children. Data shar- ing is important to maximize the actionable knowledge generated from research data. Sharing TBI data is a goal of the NIH. To achieve that goal, NIH and the U.S. Department of Defense have developed the Federal Interagency TBI Research (FITBIR) Informatics System to serve as a central repository for TBI data. However, FITBIR currently contains little information about children who require critical care after TBI. This proposal will significantly expand the data available in FITBIR about critically in- jured children with TBI. The NICHD-supported PEDiatric vAlidation oF vAriableS in TBI (PEDALFAST) prospective cohort study enrolled 395 consecutive children with acute TBI admitted to the intensive care unit (ICU) at two large level 1 pediatric trauma centers in the U.S. PEDALFAST was the first study to report the use of an important new outcome measure, the Functional Status Scale (FSS), in chil- dren with TBI. PEDALFAST collected information about patient, injury, and imaging characteristics and events from the pre-hospital, Emergency Department (ED), ICU, and rehabilitation phases of care. Aim 1 is to harmonize the PEDALFAST data to the TBI common data elements (CDEs) developed by NIH, develop complete metadata, and deposit the de-identified data and metadata in FITBIR. Aim 2 is to de- velop and distribute a free, open source R data package containing the de-identified, CDE-harmonized PEDALFAST data and metadata. This aim will leverage the structure, metadata, and documentation built into “packages” in the R statistical programming environment to provide an easy-to-use and well- documented source for the CDE-harmonized PEDALFAST data. This proposal is significant because it will substantially increase the amount of data about critically injured children with TBI available for sec- ondary use. The data will be harmonized to the current gold standard CDEs for pediatric TBI and will be accompanied by complete metadata. This proposal is innovative because the PEDALFAST data will be made available in the largest U.S. TBI data repository (FITBIR) and also as a free and downloadable R data package. This innovative use of an open-source package format will make the data immediately available for reuse by analytic teams. Ready reuse of the PEDALFAST data is anticipated because it will be available in two different well-documented formats.

项目摘要/摘要 创伤性脑损伤（TBI）是死亡的主要原因和儿童获得的残疾。数据共享 - ING对于最大化研究数据产生的可行知识很重要。共享TBI数据 是NIH的目标。为了实现这一目标，NIH和美国国防部已发展 联邦机构间TBI研究（FITBIR）信息学系统将作为中央存储库 对于TBI数据。但是，Fitbir目前几乎没有关于需要关键的孩子的信息 在TBI之后关心。该提案将显着扩展Fitbir中有关批判性信息的数据 与TBI的孩子一起玩。 TBI（pedalfast）变量的NICHD支持的儿科验证 前瞻性队列研究招收了395名急性TBI的儿童，该儿童接受了密集型 在美国踏板的两个大级儿科创伤中心的护理单元（ICU）是第一项研究 为了报告使用重要的新结果度量的使用，功能状态量表（FSS） 与tbi一起。 Pedalfast收集的有关患者，伤害和成像特征的信息以及 医院前，急诊科（ED），ICU和护理康复阶段的活动。目的 1是将PEDALFAST数据统一到NIH开发的TBI通用数据元素（CDE）， 开发完整的元数据，并将其存放数据和元数据存储在Fitbir中。目标2是 自线并分发一个免费的开源R数据包，其中包含DE-SIDEN，CDE-HARMONIZED PEDALFAST数据和元数据。这个目标将利用结构，元数据和文档 内置在R统计编程环境中的“包装”中，以提供易于使用且易于使用的 记录的CDE-HARMONIDED PEDALFAST数据的来源。该提议很重要，因为它 将大大增加有关急需TBI的严重受伤儿童的数据量 持续使用。数据将与小儿TBI的当前金标准CDS统一，并将 可以通过完整的元数据完成。该建议具有创新性，因为踏板的数据将 可在最大的美国TBI数据存储库（FITBIR）中提供，也可以作为免费可下载的 R数据包。开源软件包格式的这种创新使用将立即使数据 可供分析团队重复使用。预期踏板快速数据的现成重复使用，因为它 将有两种不同的有据可查的格式。