ponsors have to integrate multiple sources of data to fully understand the patient experience, including the effects of treatment on their daily lives. That’s the main, core area where we see the value of real-world data (RWD),” explains Ebony Dashiell-Aje (Executive Director and Head, Patient-Centered Outcomes Science, BioMarin Pharmaceutical Inc.) in this DIA 2024 interview with OM1 CEO Rich Gliklich.

“The first thing that comes to mind is How much data do I need to understand in a real-world setting what’s really happening with patients? How much data can I get, how much data do I have, to know that this is a true occurrence or truly the experience? That involves multiple data sources and incorporating key strategic and methodological processes to generate reliable and valid data to measure how patients feel, function, and survive.

“As you’re thinking about what data to generate, you need to understand What are my research objectives? What am I trying to answer? What questions do I need to answer to understand the benefit of treatment in a patient’s life? When you think about that, that ties back to study design and exactly what type of study is necessary to get the data you need to answer those questions.”