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Welcome to the National CJD Research & Surveillance Unit

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.

CJD was first described in 1920. The commonest form is called sporadic CJD and occurs worldwide causing around 1-2 deaths per million population per year. A new form of CJD (variant CJD) linked to bovine spongiform encephalopathy (BSE) in cattle was identified in 1996. There are also genetic forms of human prion disease linked to mutations of the prion protein gene and cases caused by infection via medical or surgical treatments (iatrogenic CJD).

Data and Reports

Latest News

Study of UK patients treated with growth hormone shows seeding of amyloid beta in the brain and blood vessels

A Department of Health-funded team at the National CJD Research & Surveillance Unit led by James Ironside and Diane Ritchie with collaborators in the Centre for Cognitive and Neural Systems, Edinburgh, Clinical Neurosciences, Cambridge and the UCL Great Ormond Institute of Child Health have performed a detailed study of 33 UK hGH-iCJD patients who died from 1991 to the present day. They looked at the accumulation of amyloid beta in these patients’ brains and compared the findings with amyloid beta accumulation in 12 other UK hGH recipients who died from causes other than CJD, and in age-matched patients with sporadic and variant CJD. The resulting paper by Diane Ritchie et al is published in Acta Neuropathologica .



The National CJD Research & Surveillance Unit (NCJDRSU) is part of the Centre for Clinical Brain Sciences (CCBS), University of Edinburgh and is part of the Deanery of Clinical Sciences in the College of Medicine and Veterinary Medicine.  CCBS (Director Siddharthan Chandran) integrates laboratory and clinical research to study the causes, consequences and treatment of major brain disorders.  Based at the Royal Infirmary of Edinburgh and three other Edinburgh hospital sites, CCBS members conduct research of international recognition and reputation: major strengths include clinical trials and trial methodology, neuroimaging, neuropathology and regenerative neurology (including human stem cell research) in a wide range of conditions encompassing brain vascular disease/stroke, neurodegenerative disease, prion disease and psychiatric disorders.