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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).

NCJDRSU STATEMENT DURING COVID-19 PANDEMIC

We are still providing a full diagnostic service during the Covid-19 pandemic, albeit with some changes to our working practice.  We are using telehealth technology to assess patients rather than face to face visits and can access investigation results electronically.

Referring clinicians are asked to contact NCJDRSU on the telephone numbers 0131 537 1980, 0131 537 2128 or 0131 537 3103.  The answerphone is checked regularly and you will be called back by NCJDRSU staff.   The email addresses lothian.secureCJD@nhs.net and contact.cjd@ed.ac.uk are also regularly monitored.

For patients and their families needing care and support during this time please see the statement on the care and support page.

CCBS

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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. 

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