
- 30 minute duration
Session
Real-World Data (RWD) arises from a wide variety of situations in healthcare that give us an insight into normal clinical practice. In recent years there has been growing interest in understanding whether these data can be harnessed to develop robust Real-World Evidence that can inform decisions made by regulators, HTA bodies, Payers, clinicians and patients. When traditional research evidence from controlled clinical trials is limited, as is often the case in rare diseases, the potential for use of RWE seems particularly important, but its use is not commonplace.
This session will explore the opportunities and challenges in using RWD and reflect on actions that all stakeholders need to take to ensure that the most robust RWE is generated to inform all decisions. Particular focus will be placed on actions recommended for patient groups.
Learning outcomes
- The importance of RWE in the field of rare diseases
- Appreciation of the challenges in developing RWE
- Specific actions that patient groups could take in collaboration with others.