Making Decentralized Clinical Trials For Rare Disease Patients Commonplace

By Caroline Potts, MRN

While clinical trials can be a critical key in “unlocking the gate” to the next stages of ongoing care and treatment, understanding the journey of the rare disease patient and family can provide invaluable perspectives in the development of the trial protocol, as well as its implementation. The philosophy that rare disease patients are individuals with families and lives — and not subjects — should inform every aspect of the trial.