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Tag: Patient-reported outcomes

This online library aims to help users find a variety of annotated resources about patient engagement to help them launch patient-centered efforts, enhance existing programs or identify where more work is needed. To suggest an item to be included, contact Taylor Cusher of FasterCures here.

Patient-Reported Outcomes: Design with the End in Mind


FasterCures asked a multi-stakeholder group to discuss PRO-related challenges and opportunities across R&D, starting with the perspective of patients. 

Patient-reported outcomes Patient organizations

Patient-Focused Drug Development: Public Workshop on Guidance 1, Collecting Comprehensive and Representative Input

Food and Drug Administration

This discussion document provides a basis for discussion that will inform the development of guidance documents to facilitate collection and...

Patient-reported outcomes

Why We Do It


ICHOM’s mission is to unlock the potential of value-based health care by defining global "Standard Sets" of outcome measures that...

Patient-reported outcomes

Measuring What Matters to Patients: Innovations in Integrating the Patient Experience into Development of Meaningful Performance Measures

PatientsLikeMe, National Quality Forum

The Robert Wood Johnson Foundation (RWJF) funded PatientsLikeMe® in partnership with the National Quality Forum (NQF) to evaluate the novel...

Patient-reported outcomes

Clinical Outcome Assessment Qualification Program

Food and Drug Administration

This resources aims to provide a guide patient-focused outcome measurement in clinical trials. A clinical outcomes assessment (COA) qualification is based...

Patient-reported outcomes

PROsetta Stone

PROsetta Stone

This resource aims to create a common system of measurement for PROs by providing equivalent scores across different scales for...

Patient-reported outcomes

Patient-Reported Outcomes in Performance Measurement

National Quality Forum

The National Quality Forum (NQF), with funding from the Department of Health and Human Services, brought together a diverse set...

Patient-reported outcomes

Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records


This guide was developed to help researchers, clinicians, etc. incorporate and optimize patient-reported outcomes in electronic health records. (May 2017)

Patient-reported outcomes PCORI

Publications & Talks


This page links to all peer-reviewed publications, presentations, and featured research produced by PatientsLikeMe.

Patient-reported outcomes Patient preference Patient focused drug development

Principles for Making Health Care Measurement Patient-Centered

American Institutes for Research

Five principles for patient-centered measurement were developed with input from a multidisciplinary group of stakeholders.

Patient-reported outcomes

Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events

National Cancer Institute

Information about a patient-reported outcome measurement system developed by the National Cancer Institute to capture symptomatic adverse events in patients...

Patient-reported outcomes NIH

Clinical Outcome Assessment Compendium

FDA Center for Drug Evaluation and Research

The compendium is intended to facilitate communication and  transparency about clinical outcome assessments by summarizing information for many different diseases...

Patient-reported outcomes