Two new papers featuring our researcher Annalisa Landi as one of the authors and released in the framework of the European Joint Programme on Rare Diseases (EJP RD), have been published in the journal Nature. These papers propose a new way to responsibly share research data, medical records, biological samples and other biomedical resources.
Sharing these resources is critical for scientific research and patient care, but it is difficult to do so responsibly because the conditions for sharing them can be complex and variable.
In the publication "Getting your DUCs in a row - standardising the representation of Digital Use Conditions", the issue is addressed by proposing the Digital Conditions of Use (DUC) framework, which aims to simplify the management of these resources in compliance with various conditions of use.
The DUC framework balances the need for clear rules with the flexibility required for different applications, ensuring that patient care and scientific discovery are advanced responsibly. The second paper "Common Elements of Conditions of Use. Atomic concepts for consistent and effective information governance" - introduces a basic vocabulary of terms to describe conditions of use in a consistent and clear manner. This publication ensures that these terms are practical and widely applicable for biobanks and registries, and that the management and sharing of biological resources is more effective through the creation of standardised profiles of sharing policies.