New approaches for sharing data and biological samples were presented by CRS4 researchers on May 27, 2026 at the Medical Informatics Europe conference (MIE 2026) in Genoa, Italy.
From May 25 to 28, 2026, the Medical Informatics Europe conference, organized by the European Federation for Medical Informatics, will bring together the scientific community working on innovation in the medical field. The program includes sessions dedicated to clinical informatics, artificial intelligence, research infrastructures, education, and integration toward the One Health vision promoted by the World Health Organization, which considers human, animal, and environmental health as closely interconnected.
Within the conference, particular attention will be devoted to a key topic for biomedical research: enabling patients and participants in clinical studies to understand and decide how their data and biological samples are used for research purposes, while allowing them to express and modify over time their consent regarding the use and reuse of such information in an explicit way that can be interpreted consistently across the scientific community.
Cecilia Mascia from the CRS4 ViDiC sector (Visual and Data-intensive Computing) will present the paper A FHIR Consent Profile for European Research Biobanks, which introduces an integration profile based on international standards and terminologies (HL7 FHIR and Common Condition of Use Elements) for sharing data and biological samples within the research network of the European biobanking infrastructure BBMRI-ERIC.
The paper describes the integration profile developed through the collaboration between a CRS4 ViDiC working group, composed of Giovanni Delussu, Francesca Frexia, Luca Pireddu and Alessandro Sulis, and researchers from CNR-IEOMI, the University of Bologna and the University of Milano-Bicocca.
The approaches presented are the result of established research activities carried out at CRS4 and have received funding from the projects BBMRI.it Consent (PNRR Strengthening BBMRI.it), ToPMa (Intervento RP_CRP_077 funded through FSC 2014-2020 resources – Patto per lo Sviluppo della Regione Sardegna) and XDATA (Contribution pursuant to Article 9 of Regional Law 20/2015, Autonomous Region of Sardinia, Institutional Project).
