In 2025, RPV surveyed 2156 patients in the United States for their thoughts on participating in co-design for clinical trials. On Sept. 16, noted industry media outlet PharmaVoice referenced the survey in an article on patient involvement, rethinking rare disease R&D, and how selecting the right endpoint for a clinical trial can make or break a drug’s success
“According to a Rare Patient Voice survey of more than 2,000 respondents, 69% were unaware that clinical trial co-design exists and just 4% had participated in it.”
Read the article in its entirety: https://www.pharmavoice.com/news/rare-disease-clinical-trials-patient-involvement-speak-foundation/830470/
Review the RPV presentation on patients and clinical trial co-design: https://rarepatientvoice.com/wp-content/uploads/2025/06/Patients-and-Co-Design-in-Clinical-Trials.pdf
