Significance of Real-World Data in the Development of Reliable Disease Registries and Smarter Clinical Trials with Mark Larkin Vitaccess

Mark Larkin, Founder and CEO of Vitaccess, leverages real-world patient data captured through mobile devices and wearables, combined with EMRs, claims data, and registries, to generate insights beyond the scope of traditional clinical trials. The company maintains proprietary disease registries, notably in myasthenia gravis, enabling researchers to compare treatment efficacy, side effects, and patient adherence to therapies in their daily lives. By linking diverse data sources and identifying comorbidities, the platform informs drug development, regulatory decisions, and the personalization of treatment matching.

Mark explains, "Our mission is about patient-centric, science-driven research. That's how we do real-world research. We think that's a powerful way to combine scientific rigor with putting the patient at the heart of what we do. People are probably familiar with the idea that real-world data and real-world evidence are complementary to clinical trials. They don't have the same levels of scrutiny or the same designs, but nonetheless, if we do it properly, we should make it as rigorous as possible so the data can be used by many different audiences. Putting the patient at the heart of our designs means we can be in the best position to quantify the patient experience. That's really what we do, perhaps in the simplest terms."  

"Well, I'd say that real-world data is a very broad church. There's lots of different types of data. Where I think you are referring to is data generated directly from patients, the patient-reported data. And I'll come back to that in a second, but it also includes a wide range of other data types and sources. So it could be electronic medical records. In the United States, very commonly it's claims data. There are registries." 

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