The application of electronic patient reported outcome (ePRO) data collection and direct-to-patient reporting has enabled patients participating in registries to report their symptom or treatment experiences between physician visits, with minimal patient burden. These independent reporting approaches – described in Chapter 5 of the Agency for Healthcare Research and Quality’s ‘Registries for Evaluating Patient Outcomes: A User’s Guide’ – are often applied in real world research not only to collect data directly from the patients outside of an office visit, but also to support patient retention over long follow-up periods.

By Eric Gemmen, MA, Senior Practice Leader, Epidemiology & Outcomes Research, Real-World & Late Phase Research, Quintiles; Michelle Leavy, MPH, Manager, Health Policy, Real-World & Late Phase Research, Quintiles; Erin Tomaszewski, MPH, Epidemiologist, Real-World & Late Phase Research, Quintiles