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Creutzfeldt-Jakob Disease

Creutzfeldt-Jakob disease (CJD) is a rare and ultimately fatal degenerative brain disease.  It is one of a group of diseases called Transmissible Spongiform Encephalopathies (TSEs) that affect humans and animals.  TSEs are thought to be caused by the build up in the brain of an abnormal form of the naturally occurring ‘prion’ protein.  Unfortunately, there is no treatment or cure for CJD at present.  

Further information on the different types of CJD can be found on the NHS Choices website.

Responsibility for management of CJD

Responsibility for investigating, assessing and managing CJD incidents (and where appropriate notifying patients) is undertaken by local NHS boards and local Health Protection teams. 

National Guidance on CJD incident management (including forms for trusts, hospitals and local health protection teams) has been developed by Public Health England to support this process.

It provides advice and information for the public health follow-up required and should be used for;

  • A newly diagnosed or suspected case of CJD.
  • A person at increased risk of CJD.
  • A surgical procedure carried out on a patient with CJD or at increased risk of CJD where TSE infection control guidelines were not followed.

Annual surveillance of those at risk vCJD

A new form of CJD known as variant CJD (vCJD) was first identified in 1996 and is strongly linked to exposure, probably through food, to a TSE of cattle called Bovine Spongiform Encephalopathy (BSE). 

To help prevent the spread of vCJD in healthcare a series of public health measures were implemented which are:

  • improving the standards and processes for decontaminating instruments;
  • taking special infection control measures in relation to instruments when operating on patients with, or at increased risk of, CJD;
  • measures to protect the blood supply; and
  • excluding transfused donors from the living bone donation programme.

HPS collect information on the number of people in Scotland who have been identified as being at increased risk of contracting vCJD.  This information is collected every year by sending the patient’s GP a letter and form and will help to find out how the number of people who have contracted vCJD develops over time.   This information is sent to Public Health England (PHE) who collate the figures for the whole of the United Kingdom and issue these on a bi-annual basis.


Guidance from the ACDP TSE Risk Management Subgroup (formerly TSE Working Group)

The aim of the guidance is the minimisation of the risk of transmission of CJD, and vCJD. The current guidance was published in June 2003, replacing the March 1998 edition. The guidance has evolved in the years since 2003, with new annexes being added and current guidance being updated as further scientific information becomes available, or future policy decisions need to be reflected.

Information leaflets

The following leaflets for patients identified as at increased risk of Creutzfeldt-Jakob Disease (CJD) and for healthcare professionals involved in the care or notification of these patients can be found on the Public Health England website:

For patients

  • Information for people who have an increased risk of CJD?
  • Who has an increased risk of CJD?

For doctors and healthcare staff

  • Background information for healthcare staff

Further information

Further diagnostic information about CJD can be found on the National CJD Surveillance Unit Website

The CJD Support Network provides help and support for people with CJD, their families, carers and concerned professionals.