We’re always striving to strengthen the connection between patients’ voices and trusted data. Here’s why diagnosis confirmation and linked data matter more than ever in research. When it comes to recruiting patients for research, one thing has always guided Rare Patient Voice: we owe it to patients and researchers alike to get it right from the start. That begins with confidence—confidence that the people we’re engaging truly have the diagnosis we’re studying.
Too often, research struggles not because of the design, but because of the foundation. Without confirmation of diagnosis, results can be misleading or incomplete. And in rare and complex diseases, where every data point and every person matters, accuracy is everything. At Rare Patient Voice, we don’t yet have confirmed diagnosis for every member of our community—but we’re working on it. Through our partner Clinakos, we have processes to verify diagnosis when needed and are developing ways to connect patient-reported data with other sources to add even more value for researchers.
When confirmation can be combined with electronic health records, pharmacy data, lab results, and claims data, it paints a far richer picture of a patient’s healthcare journey—the treatments they’ve tried, the tests they’ve undergone, and the challenges they’ve faced. Bringing together verified patient experiences with these complementary data sources builds a stronger foundation for real-world evidence. It deepens understanding, enhances credibility, and ultimately helps improve outcomes for patients.
At the end of the day, our work isn’t just about data—it’s about people. Every step we take toward better confirmation and more complete data honors the patients who share their stories and ensures their voices truly shape the future of research.
