DIA 2015 51st Annual Meeting: Develop. Innovate. Advance.

Patient registries are increasingly being used to conduct research on comparative effectiveness, patient outcomes, and safety. Innovative approaches to designing and operating registries are critical to support their growing use and the increasing complexity of the research questions that they address. In this forum, we will summarize key points in “Registries for Evaluating Patient Outcomes,” a widely used guide on registry best practices, and present case examples on leveraging patient-generated registries, linking registries with biorepositories, conducting multinational registries, and designing registries using external electronic medical record data. In addition, presenters will discuss an emerging area of debate – registration of patient registries in systems such as ClinicalTrials.gov, the Registry of Patient Registries (RoPR) and the ENCePP E-Register of Studies. We will discuss the rationale for registration and review and compare options for registration, both in the US and globally.