ERICA (European Rare Disease Research Coordination and Support Action) aim to strengthen the existing clinical research and innovation capacities of the individual ERNs to allow them to perform collaborative clinical research that meets the regulatory standards required by regulators and Health Technology Assessment (HTA) agencies.
March 2021 – February 2025
EURORDIS role in the project
EURORDIS is a project partner, ensuring that the rare disease patient community perspective is embedded on all aspects linked to the development of Clinical Research Networks, including but not limited to – health data use, establishing research priorities and developing a patient engagement in clinical research. EURORDIS regularly engages and shares information with the members of ePAG Research and Registries Working Group to capture their feedback on specific aspects around ERN registries and health data use and sharing for research. EURORDIS is also drafting a framework for Patient Engagement in clinical trials.