Designing Clinical Trials with the Patient in Mind

Jenn McNary is a mother of children with rare conditions, as well as an outspoken advocate who has sought to elevate the patient voice in rare disease drug development. She was responsible for the organization of the largest FDA advisory committee hearing in history, with more than 1,000 Duchenne Muscular Dystrophy advocates, families, clinicians, and researchers in attendance. Now, as executive director and head of patient advocacy and engagement for Fulcrum Therapeutics, she’s working to inform company’s clinical trial designs through bringing in patients’ perspectives. We spoke to McNary about her journey as a patient advocate, her role as an advocate within industry, and how her views on the patient voice have evolved.