Source: International Society For Pharmacoeconomics and Outcomes Research (ISPOR)
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 Outcome and Observer-Reported Outcome Assessment in Rare Disease Clinical Trials: An ISPOR COA Emerging Good Practices Task Force Report
This paper identifies emerging good practices for using patient-reported and observer-reported outcomes in rare disease outcomes research.
Researchers describe strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct outcomes research, drawing on three...