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Two new reports on vCJD (variant Creutzfeldt-Jakob Disease) have been published today as part of on-going work to manage the risks associated with the disease.
The first was commissioned by the Department of Health and produced by the specially convened vCJD Clinical Governance Advisory Group (CGAG). Chaired by Sir William Stewart, it proposes the creation of patient-focused clinical governance arrangements to standardise the care that patients at risk of vCJD receive across the country. It recommends that GPs should take the lead in commissioning care for them, supported by consultant neurologists and specialist centres such as the National CJD Surveillance Unit and the National Prion Clinic.
The second report, commissioned on behalf of the Department of Health by the Health Protection Agency, examines attitudes of key stakeholders towards the possible future introduction of a vCJD test for blood donations. The findings highlight a number of issues around the potential introduction of such a test, particularly the level of accuracy that would be required; whether and how to notify those who have been tested of the results; extending the test beyond blood donors; and whether testing might affect people's willingness to donate blood.
Public Health Minister Caroline Flint said:
"We continue to monitor all aspects of vCJD very carefully, and it is timely to review support arrangements for those individuals at risk of developing the disease. Although the current arrangements for support have worked well, the CGAG report has highlighted the importance of standardising those arrangements across the whole country.
"We are also preparing for the possible availability of a test for vCJD. Whilst such a test could be valuable in helping to identify people who may be at risk, the report, published today by the Health Protection Agency, highlights some of the ethical and practical questions we are facing, both in terms of supporting the people affected, and protecting the public."
Sir William Stewart, Chairman of the CGAG, said:
"The Department of Health wisely takes a precautionary approach in dealing with the potential for vCJD infection, as there are still many gaps in our knowledge about the disease. I hope that the CGAG report provides a framework for the services available to those who, through a variety of routes, may be at potential risk of vCJD.
"It is important that the individuals affected are supported by their local GP and that they have access to more specialist sources of support, but also to participate in research opportunities, should they wish to do so."
To ensure appropriate levels of public health protection and support for individuals it is important to understand the prevalence of vCJD infection. To this end, the Health Protection Agency is currently analysing samples from the National Anonymised Tonsil Archive, and the Department of Health expects a report shortly on the potential for establishing a post mortem tissue archive to study the prevalence of vCJD.
Notes to editors:
1. Both reports can be found on-line at http://www.dh.gov.uk
2. Creutzfeldt-Jakob Disease (CJD) is one of a group of diseases called Transmissible Spongiform Encephalopathies. All of these diseases can have a very long incubation period, cause severe and irreversible damage to the central nervous system. There are so far no proven effective treatments.
3. vCJD was first identified in 1996 and affects younger people. Variant CJD patients show signs of behavioural disorder, depression and anxiety followed by problems with sensation and co-ordination, leading to progressive dementia and death over a period of six months to two years. The clinical, epidemiological, neuropathological and experimental data all point to variant CJD being caused by the same strain of prion as Bovine Spongiform Encephalopathy (BSE).
4. There have been four known instances of vCJD transmission through the blood supply: three of the recipients developed clinical vCJD, while the other died of unrelated causes. Although there is currently no approved blood test available, work is urgently under way to develop one and to find new ways to reduce the risks of transmission by filtering donated blood.
5. The report refers to the following as "people at risk":
- Recipients of blood components donated by people who later developed vCJD.
- Recipients of certain plasma products (clotting factors).
- Blood donors to patients who later developed vCJD.
6. For enquiries please contact 020 7210 4850.
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