South East Scotland Neurological Services

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CJD Research in Edinburgh

CJD (Creutzfeldt-Jakob Disease) is a rare illness and is one of a group of diseases called prion diseases, which affect humans and animals. Prion diseases exist in different forms, all of which are progressive, currently untreatable and ultimately fatal. Their name arises because they are associated with an alteration in a naturally occurring protein: the prion protein


The National CJD Research & Surveillance Unit (NCJDRSU, formerly NCJDSU) has two principal, inter-related functions: CJD surveillance in the UK and research into prion disease and related problems. Based at the Western General Hospital in Edinburgh, the Unit brings together a team of clinical neurologists, neuropathologists, scientists and others as part of the University of Edinburgh's College of Medicine and Veterinary Medicine, School of Clinical Sciences (Division of Clinical Neurosciences).





















National surveillance of CJD in the United Kingdom (UK) was initiated in May 1990 in response to a recommendation in the Southwood Committee Report of the Working Party on BSE, to identify any changes in the pattern of CJD that might be attributable to human infection with the agent responsible for the emergence of BSE in cattle. Such a change was recognised in 1996 when ten cases with a clinical and pathological picture distinct from that usually seen in sporadic CJD were described at the Unit - a new variant of CJD.


The NCJDRSU aims:


"to monitor the characteristics of all forms of CJD, to identify trends in incidence rates, to study risk factors for the development of disease and to contribute to improving the quality of care for those with CJD."


We work closely with the UK Health Departments, the National Blood Authorities, Public Health England (PHE) and Health Protection Scotland (HPS), as well as local public health teams, to provide advice where needed. Surveillance is funded by the Department of Health-England and by the Scottish Government Health Department. The NCJDRSU also receives research funding from these and other individual, charitable, national and international sources. We are particularly grateful to the relatives of patients for their collaboration, and all those otherwise supporting the work of the Unit, for their help in national CJD research and surveillance.

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cjd unit

The National CJD Research and Surveillance Unit at the Western General Hospital in Edinburgh