Using patient registries to support regulatory decision-making: Exploring the role of patient advocates – Insights from More-EUROPA

13.05.2026

This webinar focused on the More Europa project, which explores how patient registry data can support regulatory decision-making and health technology assessment for rare diseases. Peter Moll, a professor and member of the EMA’s Committee for Human Medicinal Products, explained the project’s work with three registries (heart failure, multiple sclerosis, and lung cancer) to understand how real-world data can complement clinical trial information across the drug development lifecycle. Olmo van den Acker presented research on ethical considerations in patient registries, sharing findings from interviews with MS patients about their information needs and preferences for data sharing.

Nele Vanbilsen from the European Multiple Sclerosis Platform introduced training materials developed for patients and caregivers to understand real-world data and registry purposes. The panelists discussed the importance of harmonizing data collection across registries, involving patients in governance, and ensuring transparency about how patient data is used. The webinar attracted 62 patient advocates and included interactive Q&A sessions where participants discussed the role of patient advocates in facilitating dialogue between registry owners and regulators.