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Prevention, control and management of prion diseases

Final Report Summary - NEUROPRION (Prevention, control and management of prion diseases)

The network of excellence NEUROPRION aimed at mobilising European research teams to create a scientific community able to face the challenge of prion diseases and generate the critical knowledge to protect human and animal health.

With 52 partners representing 120 research teams distributed in 20 countries, NEUROPRION encompassed more than 90 % of European teams working on prions (more than 50 % at the worldwide level). Beyond the scientific mobilisation expected by our fellow citizens, the mission of NEUROPRION was also to structure and integrate the efforts of the main European prion research teams to contribute to the creation of the new European Research Area (ERA). Facing an unprecedented threat, European researchers have created a scientific community with common tools, exchange of technical knowledge, and organisation of what has become the world's premier annual meeting of both experienced and (importantly) entering research scientists (up to 900 participants).

The decision-making structure of NEUROPRION has from the beginning relied upon a consensus framework that takes into account the various interests and opinions of its membership, while keeping bureaucratic administration to a minimum. Researchers have debated and established research and associated priorities.

More than 200 publications in international peer reviewed journals bear witness to the contribution of NEUROPRION in advancing our understanding of prion diseases, and many participants have advised national and European Union (EU) safety agencies about appropriate measures to protect human and animal health, especially after the unexpected discovery of atypical BSE and scrapie cases in bovines and small ruminants, respectively, and the diagnosis of BSE in two French and British goats.

Continuing concerns, such as the transmissibility of secondary cases of vCJD via blood transfusion, the expanding list of infectious bodily tissues (including milk from scrapie infected sheep, and muscle in multiple types of TSE infection), and the possible existence of BSE in sheep, all need to be evaluated. In recent years, with the waning of the BSE epidemic, Europe has emerged from a crisis situation, and is now re-evaluating the very strict measures that so successfully muted the crisis; however, these measures (costly but prudent) should only be relaxed on the basis of scientific knowledge. Secondary transmission of vCJD from unidentified apparently healthy cases have serious implications for blood safety and medico-surgical devices. The issue of healthy human carriers exposed to low prion doses is not yet resolved. Also, more and more links with other protein misfolding diseases are being reported, notably with Alzheimer's disease, in which the toxicity of the amyloid aggregates may be mediated by the prion protein.

Worldwide networking of the families of affected patients, which NEUROPRION members helped to federate, constitutes an already strong motivation for researchers, and the possible threats from unforeseen risks and increasing likelihood of connections with other human degenerative diseases constitute major challenges for the prion research community to continue to protect human and animal health.

NEUROPRION is now perpetuated as an international not-for-profit scientific association open to scientists all over the world. Already all the Canadian researchers federated in the network of centres of excellence PrioNet Canada are NEUROPRION members. This evolution will be accompanied by the organisation of the NEUROPRION conferences on both continents (each year alternatively in Europe or in Canada) and reservations up to 2012 are already planned.