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).

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. 

Main Office +44 (0)131 537 1980/2128/3103    

contact.cjd@ed.ac.uk (for general enquiries)

loth.securecjd@nhs.scot (for sending emails containing patient identifiable information)

Updated ACDP TSE Subgroup Health and Safety Guidance

The Advisory Committee for Dangerous Pathogens (ACDP) TSE subgroup has revised the laboratory guidelines for handling TSE tissues.

Latest NCJDRSU CJD Monthly Statistics

Latest NCJDRSU annual report, covering the period 1990-2023

Please note we are no longer sending out printed copies of the annual report routinely.   If a hard copy is required please request this via the Contact Us page.