Johanna Blom (FACILITATE Coordinator, UNIMORE) and Daniela Quaggia (Cittadinanzattiva-Active Citizenship Network) have been invited to present the work carried out by the FACILITATE consortium on the Return of Individual Participant Data (RoIPD) during an upcoming European Clinical Research Infrastructure Network (ECRIN) Scientific Meeting.The session is organised for ECRIN staff and will also be open to Clinical Trial Units (CTUs) within the ECRIN network, as part of ECRIN’s monthly meetings.
Clinical trials generate valuable individual-level data, which is rarely returned to participants. FACILITATE has addressed this gap by developing an ethically and legally robust framework for RoIPD in the EU. The speakers highlighted progress made in shaping RoIPD processes and their future implementation. They will also showcase the engagement of patients’associations and how RoIPD can empower participants, improve health literacy, and advance medical research.
ECRIN (European Clinical Research Infrastructure Network) supports multinational clinical research by providing advice and services for the set-up and management of investigator- or SME-led clinical studies in Europe, and by connecting national CTU networks through its scientific partners to generate evidence that optimises medical practice.
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