The landscape of clinical trials, particularly within the area of rare diseases, is undergoing a necessary and profound evolution. No longer is the patient merely a passive subject; they are emerging as an essential, co-equal partner in the design process. This paradigm shift, often termed “co-design”, was the focus of a critical discussion earlier this autumn on the RARE REV-inar episode 022: Empowering patients: Co-designing clinical trials for better outcomes, sponsored by Rare Patient Voice. Featuring rare disease experts Wes Michael, founder and president of Rare Patient Voice (RPV), and Mindy Cameron, president of Advocacy Works Consulting and moderated by Rebecca Stewart, CEO of RARE Revolution Magazine, their conversation revealed that co-design is not just a trend, but a foundational requirement for developing successful, patient-centric therapies.
The following article, sponsored by RPV, is based on the 2025 RARE REV-inar.
The co-design revolution: how empowering patients is the future of clinical trials
