Commentary|Articles|September 4, 2026

Beyond Patient Centricity: What Rare Disease Research Gets Right

Patient-centricity remains largely consultative in most clinical research, yet rare disease communities demonstrate that genuine partnership from protocol inception improves feasibility, reduces unnecessary burden, and identifies outcomes that matter to patients themselves.

The clinical research industry has made enormous progress in becoming more patient-centric. Patients are increasingly consulted during protocol development, patient advisory boards are becoming more common, and regulators continue to encourage greater patient engagement throughout drug development.