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

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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.