Building Your Rare Disease Cohort with Real-World Data

“Rare” is relative. Today roughly 30 million patients in the U.S. live with a disorder characterized as rare by the FDA. Globally, hundreds of millions more fall into a similar category. In many cases, the course of their disease is poorly understood, and existing treatments – if they exist at all – are inadequate. Solving these problems starts with better research. And better research starts with the right cohort.

In this webinar, you’ll learn the best practices for defining a rare disease cohort from real-world data, using methods that go beyond a handful of diagnosis codes. Regardless of your current real-world data source, our clinical sciences team will show you how to conduct a “deep search” using laboratory, procedure, medication, and biomarker data to uncover patient records that do not always include a formal diagnosis. A member of our real-world evidence consulting team will then offer guidance on measuring the fitness of your cohort’s data for various tasks, from perfecting protocol designs to conducting retrospective research on effectiveness, safety, medication adherence, and more.


K. Arnold Chan
Vice President, RWE Consulting
TriNetX, LLC

Klejda Nikolli
Manager, Clinical Study Feasibility & Analytics
TriNetX, LLC

Mary Dozier
Associate Director, Epidemiology and Real World Science
Alexion, AstraZeneca Rare Disease



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