Patient Reported Outcomes Core

Northwestern University

Researchers in the ECHO Patient Reported Outcomes (PRO) Core at Northwestern University, Chicago, Illinois, capture the voices and experiences of children and their families who are participating in the pediatric cohort consortium. The PRO Core is responsible for maintaining and providing PRO information for consortium researchers, assisting researchers with incorporating PROs into their study designs and coordinating methods for updating, validating and administering PRO information in studies.

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About PRO Core

The PRO Core provides the ECHO consortium with state-of-the-science patient-reported outcome assessment and analysis, enabled by existing clinical, developmental, psychometric, analytical, and technical expertise. The ECHO PRO Core:

1) Maintains and provides 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) Assists the cohorts with inclusion and appropriate use of PROs and observational measures into the ECHO studies.

3) Develops and validates new instruments (and modify existing instruments as needed).

4) Advises on data analyses using PRO tools, including psychometric analyses to evaluate new and existing measures as they perform in the ECHO Consortium.

The PRO Core provides direction and expertise on the selection, development, and validation of self-reported, observational, and performance-based adult and child PRO measures to frame and enable strategies that are available to the longitudinal cohort studies of the ECHO consortium, and to explore the relationship between environmental exposures and child health outcomes.

PRO leaders:

Principal Investigators: Richard Gershon; David Cella