Nothing about us without us! - The added value of involving patients/patient representatives in clinical research

Patients/patient representatives know best which aspects or symptoms of their disease most require therapeutic interventions in order to improve their well-being and quality of life, how clinical trials can be designed to ensure the least possible burden for the patients and their families/caregivers, which endpoints or changes from baseline are really meaningful to their daily lives. Patient/patient representative involvement throughout all stages of drug development are vital to ensure that researchers and pharmaceutical companies address the issues most important to patients and design optimal, patient-friendly clinical trials with a greater chance of success for the company and the patients. The added value is in helping to de-risk and accelerate clinical development through to approvals.