Common questions about CJD
Creutzfeldt-Jacob Disease (CJD) - patient safety and reduction of risk transmission via interventional procedures – Common Questions
What is CJD?
Creutzfeldt-Jakob Disease (CJD) is a term that includes several alike brain diseases. Variant CJD (vCJD) is a similar condition which was discovered in 1996. vCJD is believed to be a human form of bovine spongiform encephalopathy (BSE) also known as ‘mad-cow disease’.
Both CJD and vCJD cause damage to the brain, causing psychiatric symptoms, problems in walking and eventually dementia and death. Early symptoms such as loss of coordination and trembling sometimes be confused with other diseases like Alzheimers and Parkinsons. Patients diagnosed with CJD or vCJD normally die within 6 to 18 months.
How can CJD be transmitted via interventional procedures?
It is believed that CJD and vCJD are transmitted by prions, though this is still not completely certain. Prions are molecules of protein and unlike other germs (like bacteria and viruses) they cannot be easily disabled or killed with disinfectants or by heating. Patients with CJD and vCJD have high concentrations of prions in particular tissues in their body, including the brain, nerves and eye. Parts of the body where prions are very concentrated are called ‘high infectivity’ for CJD and vCJD.
If a patient with CJD or vCJD receives an interventional procedure there is a possibility that the instruments used might become contaminated with prions, particularly if this operation is done on high infectivity tissue. Instruments are cleaned and sterilised after every operation, but there is still a remote possibility that the next patient who has an operation with one of these instruments might become infected with CJD or vCJD.
What is the risk of transmission via interventional procedures?
At present we cannot be sure what the risk of transmission is. However, we do know that only about one in a million people have CJD and only 142 people are known to have died of vCJD since 1996.
How can interventional procedures be made safe?
The only way that interventional procedures can be made completely safe is to use disposable instruments for all procedures. However, disposable versions of surgical instruments do not exist for all procedures. Where they do exist they may be very expensive and their performance during surgery may be different to that of reusable instruments.
What areas will the NICE guidance cover?
NICE will produce guidance on the prevention of CJD and vCJD transmission via interventional procedures. The guidance will look at interventional procedures done on high and medium risk tissues (where prions are fairly concentrated) as well as dental procedures. The guidance will look at the way instruments are cleaned and sterilised and will make recommendations about whether reusable instruments or disposable instruments should be used in different procedures.
The guidance will not examine the risks of CJD and vCJD transmission as a result of blood transfusions.
Why is NICE looking at this area?
NICE has been asked to examine this area and issue guidance by the Chief Medical Officers of England, Scotland, Wales and Northern Ireland.
When will guidance be issued?
NICE developed a scope and consulted publicly on this during October and November 2004. The scope is now finalised and appears on the NICE website (www.nice.org.uk/cjd). The scope describes all of the details of this work, including the areas that will and will not be covered.
Guidance will be developed during 2005 and draft guidance will be publicly consulted upon in January 2006. The guidance will be finalised and issued to the NHS, along with information for the public, in May 2006.
Where can I find out more?
The NICE website (www.nice.org.uk/cjd) is the best place to stay up to date with this work. The guidance scope appears here. The draft and final guidance, and information for the public, will also appear there once they are developed.
Other relevant information, including more details on the guidance development process, contact information and the membership of the group that will decide on the guidance recommendations are also available on the NICE website.
How can I get involved?
A stakeholder meeting was held on 11 February 2005. The purpose of the meeting was to explain the guidance development process and describe how stakeholders can best engage with guidance development.
The draft guidance will be publicly consulted upon in January 2006. This means that any member of the public can comment on these drafts and these comments will be considered by the group that decides on the scope and the guidance. NICE is particularly keen to hear comments from patient groups and clinical specialties and will actively seek these.
