Facilitate is looking at ways to return data to patients participating in medical trials. The project aim to implement best practice for handling personal data protection regulations, and generate recommendations on which, when, and how data should be returned to study participant. It will also create a framework to allow the re-use of clinical trial data. Patients will be at the centre of data governance thanks to advanced communication tools and participatory technologies.
January 2022 – December 2025
EURORDIS’ role in the project
As a project partner, EURORDIS will bring the patient voice to the project, making sure that the process of returning data to patients participating in medical trials are built around the needs of people living with a rare disease. The EURORDIS’ Digital Data and Advisory Group (DAG), consisting of legal experts and patient volunteers, will play a pivotal role by bringing their knowledge and perspective to the project. The project also helps us to follow up on our Rare Barometer study and subsequent publications on rare disease perspectives on data sharing.