ECHO PRO Research Resource: A Developmentally-based Measurement Science Framework for Assessing Environmental Exposure and Child Health

项目总结：我们建议为ECHO联盟提供最先进的患者 报告的结果（PRO）评估和分析，通过我们现有的临床，发展， 心理测量、分析和技术专长。ECHO PRO核心的责任范围将 包括：1）维持和提供成人和儿童接触和健康评估，包括自我评估， 和代理报告，在多种情况下儿童功能的观察措施， 儿童功能多方面的措施; 2）协助协调中心（CC）和队列研究中心， 在ECHO研究中纳入并适当使用PRO和观察措施; 3）制定和 验证新工具（并根据需要修改现有工具）;以及4）就数据分析提供咨询意见 包括ECHO PRO工具，包括心理测量分析，以评估新的和现有的措施， 在ECHO Consortium中工作。为了实现这一目标，我们提出了四个具体目标：目标1是作为 ECHO PRO研究资源，为选择、开发和验证提供指导和专业知识 自我报告，观察和基于性能的成人和儿童PRO（cPRO）措施。我们会陷害， 启用ECHO联盟纵向队列研究可用的策略，以探索 环境暴露与儿童健康结果之间的关系。目标二是标准化、组织化， 整理和分析在队列研究中心收集的PRO核心要素数据。工作 我们将与队列研究中心的工作人员以及CC和DAC密切合作，收集、整合和分析PRO数据 关于其信度、效度、发展敏感性和变异性，以及与其他关键因素的关系， 环境和临床变量。这一目标包括对所有措施进行全面管理， ECHO PRO核心目标3是提供支持收集所需的软件和硬件， 传输和存储联合体收集的PRO数据。我们将提供一个综合平台， 自动使用调查引擎、数据捕获和安全数据传输。该平台将兼容 利用各种信息收集模式（包括基于web/移动的输入，非数字纸张源数据， 和其他）。最后，目标4是提供关于 ECHO PRO Core与NIH、CC和其他ECHO成员的工作。我们将集中ECHO PRO 评估中心技术和我们的HealthMeasures内容（包括所有 在RFA中命名的主要评估系统。这些系统将由我们的人员提供支持， 结果研究、统计学、心理测量学、调查设计、信息技术方面的专业知识， 定性/跨文化方法。我们还将参与和管理几个输入和专业知识， 联合会研究中心和专家共同研究员，重点是产前和产后环境暴露 风险、发育科学（婴儿和幼儿发育）、母胎医学和儿科学。

PROJECT SUMMARY: We propose to resource the ECHO consortium with state-of-the-science patient reported outcome (PRO) assessment and analysis, enabled by our existing clinical, developmental, psychometric, analytic and technical expertise. The scope of responsibility for the ECHO PRO Core will include: 1) maintaining and providing adult and pediatric exposure and health assessments that include self- and proxy- reports, observational measures of child functioning within multiple contexts, and performance measures of multiple facets of child functioning; 2) assisting the Coordinating Center (CC) and cohort sites with inclusion and appropriate use of PROs and observational measures into the ECHO studies; 3) developing and validating new instruments (and modifying existing instruments as needed); and 4) advising on data analyses that include ECHO PRO tools, including psychometric analyses to evaluate new and existing measures as they perform in the ECHO Consortium. To achieve this, we propose four specific aims: Aim 1 is to serve as the ECHO PRO research resource, providing direction and expertise on the selection, development and validation of self-report, observational and performance-based adult and child PRO (cPRO) measures. We will frame and enable strategies that are available to the longitudinal cohort studies of the ECHO consortium to explore the relationship between environmental exposures and child health outcomes. Aim 2 is to standardize, organize, curate and analyze the data arising from the PRO core element data collection at the Cohort Sites. Working closely with cohort site staff as well as the CC and DAC, we will assemble, integrate, and analyze PRO data with regard to its reliability, validity, developmental sensitivity and variability, and relationship to other critical environmental and clinical variables. This aim includes thorough curation of the entire spectrum of measures in the ECHO PRO Core. Aim 3 is to provide the software and hardware necessary to support the collection, transfer and storage of the PRO data collected by the Consortium. We will provide an integrated platform for automated use of a survey engine, data capture, and secure data transfer. This platform will be compatible with various modes of information collection (including web/mobile based entry, non-digital paper source data, and others). Finally, Aim 4 is to provide overall management, coordination and communication regarding the work of the ECHO PRO Core with the NIH, CC and other ECHO constituents. We will centralize ECHO PRO resources around Assessment Center technology and our HealthMeasures content that includes all of the major assessment systems named in the RFA. These systems will be supported by our personnel with expertise in outcomes research, statistics, psychometrics, survey design, information technology, and qualitative / cross-cultural methods. We will also engage and manage input and expertise of several consortium sites and expert co-investigators in environmental exposures with emphasis on pre- and post-natal risk, developmental science (infant and early child development), maternal-fetal medicine, and pediatrics.