The NCJDSU Tissue Resource: support for continued banking activities

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Prion diseases are fatal disorders that affect the brain, and include diseases such as BSE or ?mad cow disease? in cattle and CJD in humans. One form of CJD, known as variant CJD, is linked to exposure to BSE through the diet. Prion diseases are transmissible, and studies of CJD and BSE have shown that the infectious agent accumulates at highest levels in the brain. However, the agent can also be present in a range of other tissues throughout the body. The aim of this research is to continue the collection and storage of tissues from all forms of CJD in a bank in the National CJD Surveillance Unit, Edinburgh. This bank played a key role in the discovery of variant CJD, and is used by a wide range of researchers in UK and across the world. The material collected comes from tissue and organs taken at autopsy from patients with suspected CJD only when the relatives have given consent. We also collect blood samples from living patients, again with the consent of the relatives. The bank has approval for this work from our local Ethical Committee, and has been used for many research projects, resulting in major scientific and medical publications. The information from this research has also made a big impact on the work of the NHS, particularly in steps to reduce the chance of transmission of variant CJD by blood transfusion and by surgical instruments. We believe that the bank will continue to be needed by researchers in the UK and elsewhere in the future, since there are so many unanswered questions about this group of diseases. There is also a major need to help develop a test for CJD that can be used on living patients, which will be helped by the use of the tissue and blood samples in our bank. We run the bank according to MRC guidelines, and plan to use a MRC Steering Group (which includes 2 members of the public) to oversee our work. The results from our work are presented in many forms, such as scientific and medical papers, lectures (including public lectures) and in interviews with the press, radio and television.