TSE inventory recommends Community action
A detailed report of the distribution of transmissible spongiform encephalopathies (TSEs) around Europe was unveiled in Brussels on 23 April. It constitutes the first broad-scale effort at the Community level to encourage Member States to share data about this group of diseases, which includes BSE and its human equivalent, new variant Creutzfeldt-Jacob disease (nvCJD). A group of leading experts in the field, established by Research Commissioner Philippe Busquin, compiled the inventory of national research activities in TSEs following a request from the Research Council in November 2000. Speaking on behalf of the expert group, British researcher Professor Robert Will of the National Creutzfeldt-Jacob-Disease (CJD) Surveillance Unit in Edinburgh, Scotland, explained the need for continued research and monitoring of the incidence of TSEs throughout Europe: 'I think there is now overwhelming evidence that BSE is the cause of nvCJD,' he said. 'The mechanism of transmission is harder to establish...We have not yet determined this, but the most likely mechanism is through food that contained a high level of cerebral spinal material...Current analyses suggest the increase in nvCJD is growing over time.' Uncertainties about the incubation period from infection to showing symptoms of nvCJD mean that the experts cannot predict whether Europe will experience an epidemic of the disease, or on what scale. This makes monitoring of the disease around Europe extremely important. So far, the UK has conducted the most research in this area, following its BSE epidemic. 'Exposure is much higher in the UK than elsewhere so what happens there will probably be reflected elsewhere,' explained Professor Will. The value of collaborative research on CJD surveillance cannot be underestimated, he added. By pooling their knowledge, the experts hope to harmonise research methodologies around Europe, in turn improving the comparability of scientific data between countries. Accumulating a critical mass of data will improve understanding of the disease and the potential for further research will also be enhanced by linking research groups, complementary projects, and the sharing of data, techniques and research materials. The information they collect will in turn be provided to policymakers and the general public. The Commission has several initiatives in the area of TSEs, funded though its 50 million euro action plan on TSEs, launched in 1996. However, the expert group's work constitutes a change in the Commission's approach to assisting understanding of this group of diseases. Whereas in the past it funded individual research projects on TSEs, the expert group's role constitutes a more strategic approach, actually aiming to bring more coordination to the work carried out in laboratories across the community and beyond. EU-funded projects focused on TSEs (EUROCJD and NEUROCJD) involve EU Member States, Australia, Canada and Israel, and the expert group is also recommending more cooperation with the candidate countries. 'We need to have common expertise pooled in all [European] laboratories,' commented Commissioner Busquin. 'The European Research Area is fully justified here. We can network all our knowledge and have as many links as possible. 'What struck me was that the researchers in Member States don't have access to samples. It's intriguing to see the differences [in the research infrastructure] in the Member States...The merit of this inventory is that we can get an overall picture of what is being done at the moment.' The inventory, which is now available to the public, identifies strengths and weakness of European research in this field. In particular, it says the research effort is handicapped by a lack of well characterised sample materials, limited availability of animal models and cell lines, and a lack of trained scientists to carry out the research. 'We need to review resources in other countries, improve audits of surveillance activities and harmonise sets of risk factors for TSEs, such as travel and diet,' said Professor Will. Clinical tests are also needed to improve diagnosis and help identify people incubating nvCJD who may be suffering prior to illness, he added. Professor Hans Kretzschmar, from the Institute for neuropathology, at the University of Munich (DE) also stressed the need for better diagnostic tests for nvCJD in particular. While diagnosis is correct on more than 95 per cent of cases upon post mortem, it is difficult to diagnose the disease in living humans and animals, because, currently it can only really be detected in brain or spinal tissue. Such biopsies are clearly not recommended. The Commission is now studying the inventory in detail and discussing which areas it wants to fund though a forthcoming call for proposals under the Fifth Framework programme's Quality of life and management of living resources programme. Some 25 million euro will become available to fund research in this area through a call for proposals at the end of May this year. 'Food safety and risk to health are a priority in the upcoming Framework programme,' Commissioner Busquin assured the press. His colleague, Bruno Hansen, who is Director of the Research DG's Life Sciences Directorate, added to this: 'Despite a considered effort, the countries involved have realised the importance of collaboration...We have identified a series of areas for cooperation and coordination, which will involve strengthening ongoing initiatives, facilitating sharing information and expansion to candidate countries. 'Surveillance must be improved through the network. We must share animal markers, and it is crucial to have exchange of samples and quality assurance of ongoing activities. Testing is also important. We should expand on best practices in abattoir techniques and we need to address social and ethical issues,' he said. 'Increased coordination is not enough. Increased funding is needed.' The May call for proposals will bring the Community contribution to research in this field up to some 70 million euro. So far, 97 cases of nvCJD have been reported in the UK, three in France and one in the Republic of Ireland. All these people had ingested animal tissue at some point in their lives. The three French casualties had never visited the UK. Uncertainty of the incubation period for nvCJD means that scientists are unable to predict the scale of a possible epidemic. Computer models of potential scenarios have produced predictions ranging from hundreds of cases to hundreds of thousands.