A new collaborative national project involving the Foundation has been recently funded and has just started. It is coordinated by Istituto Ortopedico Rizzoli and involves three other partners in Italy, ie. Gianni Benzi Foundation, Azienda Ospedaliera Ospedali Riuniti Villa Sofia Cervello and Agenzia nazionale per i servizi sanitari regionali (Agenas), with the purpose to create a model for gathering information collected within biobanks, disease registries, imaging databases and national health records to primarily improve the secondary use of data for research and regulatory purposes. The project will also describe a process to make collected data Findable, Accessible, Interoperable and Reusable (FAIR). To these aims, the model to be implemented by the project will be set up in compliance with all the applicable legal/regulatory/ethical requirements including the European General Data Protection Regulation (GDPR) Reg. (EU) 2016/679, as well as with its national implementation.
The Foundation will coordinate the ethical and regulatory activities and guide the implementation of procedures to properly handle samples and related data at different levels.