Creutzfeldt-Jakob Disease (CJD) is a progressively debilitating fatal neurological disease, which was originally recognised in the 1920’s. with a new strain called new variant Creutzfeldt Jakob Disease (nvCJD) more recently identified in 1996.

CJD deteriorates both cognitive and motor function with the rate of deterioration varying with what type of CJD a patient is diagnosed with. The deterioration in cognitive and motor function causes the patient and their carers to require ongoing intensive care and support both practical and emotional throughout the period of the illness and beyond.

There are four recognised types of CJD i.e.


In 1990 The National Creutzfeldt Jakob Disease Surveillance Unit was established through the University of Edinburgh and funded by the Department of Health to monitor the characteristics of all forms of CJD, to identify trends in incidence rates and to study risk factors for the development of the disease. The unit brings together a team of clinical neurologists, neuropathologists, scientists and research nurses specialising in the investigation of this disease.

Since 28th February 2000 a National CJD Care Co-ordinator has been employed and is based within the unit. The remit of the co-ordinator is to provide information, emotional and practical support to the patients and their family/carers and information, advice and support to professional carers and any other interested parties. The co-ordinator is able to travel to any part of the country where a patient has been diagnosed with CJD to provide this assistance.

For more details, information and research on all of the above, including clinical aspects of the disease and other institutions involved with CJD please forward to the unit’s own website at:

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