Abstract
Sfide di governance dei dati nella ricerca biomedica – il caso NeuroRehab4EU
Il progetto NeuroRehab4EU affronta le sfide di governance dei dati nella ricerca biomedica multicentrica e internazionale, contribuendo allo sviluppo di un modello europeo di neuroriabilitazione sostenibile e replicabile lungo il continuum di cura. L’iniziativa prevede la raccolta di dati real-world clinici e socio-economici in Svizzera, Italia e Francia, in diversi contesti assistenziali, tramite piattaforme condivise come REDCap e nel rispetto delle normative sulla protezione dei dati. Tuttavia, le differenze tra sistemi sanitari, pratiche cliniche, strumenti di valutazione e quadri regolatori possono influenzare l’armonizzazione e la comparabilità dei dati. L’esperienza del progetto suggerisce che la governance dei dati coinvolga dimensioni non solo tecniche, ma anche organizzative, normative ed etiche. Progetti europei di questo tipo offrono occasioni di apprendimento collettivo, contribuendo a definire modelli di governance dei dati più strutturati, sostenibili e replicabili.
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Bio
She is a researcher at the Artificial Intelligence and Bioengineering in Rehabilitation Research Unit (AIR Lab) within IRCCS Don Gnocchi in Florence. The lab focuses on the study, validation, and development of automated systems to support clinical decision-making in rehabilitation medicine. After completing a Master’s degree in Philosophy, History and Philosophy of Science at the University of Florence, she obtained a second-level transdisciplinary Master’s degree in Artificial Intelligence at the University of Brescia. She is currently involved in supporting the management of research projects on clinical databases and contributes to laboratory activities related to clinical studies and the development of research protocols.
Abstract
Data governance challenges in biomedical research – the NeuroRehab4EU case
The NeuroRehab4EU project addresses data governance challenges in multicentre, international biomedical research, contributing to the development of a sustainable and replicable European model of neurorehabilitation across the continuum of care. The initiative involves the collection of real-world clinical and socio-economic data in Switzerland, Italy, and France, across different care settings, using shared platforms such as REDCap and in compliance with data protection regulations. However, differences in healthcare systems, clinical practices, assessment tools, and regulatory frameworks may affect data harmonisation and comparability. The project’s experience suggests that data governance encompasses not only technical aspects but also organisational, regulatory, and ethical dimensions. European projects of this kind provide opportunities for collective learning, helping to define more structured, sustainable, and replicable data governance models.
Attribution 4.0 International