Additional Resources

Choosing and Specifying Endpoints and Outcomes

Section 8

Additional Resources


Lesley Curtis, PhD

Adrian F. Hernandez, MD, MHS

Kevin P. Weinfurt, PhD


Contributing Editor

Karen Staman, MS


Resource Description
Living Textbook Resource Chapters
Patient-Reported Outcomes This resource chapter defines patient-reported outcomes and describes how to use, measure, interpret, and implement PRO measures. PRO data are used to inform and guide patient-centered care as well as clinical and health policy decision-making.
Electronic Health Records-Based Phenotyping This chapter defines phenotypes; describes how to find, evaluate, and implement appropriate phenotypes; recommends phenotype definitions; and describes phenotype use in the NIH Collaboratory and the Patient-Centered Outcomes Research Network (PCORnet). In the context of EHRs, a computable phenotype or simply phenotype refers to a clinical condition or characteristic that can be ascertained via a computerized query to an EHR system or clinical data repository using a defined set of data elements and logical expressions. Standardized computable phenotypes can enable large-scale PCTs across multiple health systems while ensuring reliability and reproducibility.
White Papers
Resources from the Collaboratory Patient-Reported Outcomes (PRO) Core
Journal Articles
Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory

(Richesson et al. JAMIA 2013)

The Phenotypes, Data Standards, and Data Quality Core, present early observations from researchers implementing PCTs within large healthcare systems. The authors identify gaps in knowledge and present an informatics research agenda that includes identifying methods for the definition and appropriate application of phenotypes in diverse healthcare settings, and methods for validating both the definition and execution of EHR-based phenotypes.
Grand Rounds
October 17, 2017 Users’ Guide for Integrating Patient-Reported Outcomes in Electronic Health Records



Version History

December 4, 2018: Added resource (change made by K. Staman).

Published August 25, 2017


Curtis L, Hernandez A, Weinfurt K. Choosing and Specifying Endpoints and Outcomes: Additional Resources. In: Rethinking Clinical Trials: A Living Textbook of Pragmatic Clinical Trials. Bethesda, MD: NIH Health Care Systems Research Collaboratory. Available at: Updated December 4, 2018. DOI: 10.28929/014.