CA25151 - Human Prion Disease International Network (PRIONIER)

Human prion diseases are rare, rapidly progressive, and uniformly fatal neurodegenerative disorders for which there are no effective treatments. Progress in understanding, diagnosing, and managing these conditions depends on sustained international collaboration among the small number of specialist centres worldwide.

This Action will strengthen and expand activities of the network, bringing together clinicians, epidemiologists, laboratory scientists, neuropathologists, genetic counsellors, and biosafety experts working on prion diseases. Its overarching goal is to accelerate the development of reliable diagnostic and prognostic tools and to ensure preparedness for future therapeutic trials through coordinated, multidisciplinary, and multicentre collaboration.

The network will maintain close engagement with patient and family advocacy groups, providing a platform for exchange between scientists and those directly affected by prion disease. Meetings will facilitate dialogue, the sharing of lived experience, and access to expert information across countries.

Given the transmissible nature of prions and the requirement for disease notification in many jurisdictions, the network will also serve as an authoritative forum to produce consensus recommendations, guidelines, and minimum standards on clinical, diagnostic, and biosafety procedures.

Finally, the Action will support training, staff exchanges, and quality control initiatives to harmonise practice and spread excellence throughout Europe. By fostering collaboration across scientific and clinical disciplines and between professionals and affected families, the network will strengthen Europe’s capacity to deliver high-quality research, surveillance, and care in the field of human prion disease.