PCR302 Short-Term Evaluation of a Capacity Building Training Course (Retina International Education Hub) for Patients and Patient Representatives in Patient Involvement in Degenerative Retinal Diseases Research and Development.

This study evaluated the RI Education Hub, designed to help patients and advocates involved in rare retinal diseases better understand medical research, regulation and healthcare policy.

Of the 12 people who completed the course, nine completed a follow-up survey. Participants reported improved knowledge and greater confidence in contributing to discussions and decision-making panels. Most intended to use what they learned to support their organisations and increase advocacy activities.