June 11, 2025 (9 a.m. – 3 p.m.)
The CNR Interdepartmental Center for Research Ethics and Integrity (CID Ethics) is organizing the workshop “ONE, NO ONE, ONE HUNDRED THOUSAND. Alliance between patients, citizens and researchers in the era of European Data Sharing”, in collaboration with the CNR Territorial Research Area of Bologna.
The event is one of the initiatives launched by CID Ethics as part of the line of research dedicated to ethical profiles within the project “Center for Research on New Drugs for Neglected Rare Diseases and Poverty,” which is the subject of an agreement between the CNR and the CNCCS Consortium (National Collection of Chemical Compounds and Screening Center).
The workshop aims to initiate a reflection on the very recent Regulation 2025/327 directed at creating an EU space dedicated to the collection, storage and sharing of European citizens’ health data. The regulation has a huge potential impact both on citizens through the possibility of accessing and controlling their health data through the creation of a dedicated platform (MyHealth@EU) and concretely exercising their right to data portability and cross-border care (of enormous importance for rare patients) and on researchers to whom an unprecedented flow of data collected in the health field is made available-structured into metadata and made interoperable (HealthData@EU)-and with the possibility of cross-sector correlation with data related to epidemiological factors environmental, socio-demographic, climatic (determinants of disease patterns) present in the Union’s databases.
Moreover, for researchers having first-hand health data means being able to better define research objectives, organize a clinical trial with sick people more quickly, and compare clinical pictures to identify symptoms and disease-specific indicators. All this will change the way medicine is practiced by giving a major boost to the personalization of care and will pave unprecedented prospects for scientific research, economic development, and the application of artificial intelligence.
To participate register here
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- Thematic Responsible: Elena Mancini
- Poster
- Agenda
- For more information: info@ethics.cnr.it
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