Using Patient Registries to Support Regulatory Decision-Making

This 5th webinar session “Using patient registries to support regulatory decision-making: Exploring the role of patient advocates – Insights from More-EUROPA” was dedicated specifically to patients and patient representatives. The webinar took place on April 29th, 2026. The following topics were discussed:

• Introduction to the webinar
• The More-EUROPA project and Patient registry RWD for decision-making on medicines in rare diseases
• Ethical principles in reusing patient data and patients’ information needs
• The training module: E-learning module and face-to-face course for patients to understand how RWD can be shared and analysed

The information slides (PDF) that were presented during the webinar can now be viewed.

ou can also watch the webinar online (YouTube video):