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Infection Control Guidelines for Creutzfeldt-Jakob Disease (CJD)

The revised edition of the Creutzfeldt-Jakob disease (CJD) National Infection Control Guidelines was endorsed on 16th January 2013. This edition replaces the previous version published in December 2007.

This document provides recommendations for infection control procedures to minimise the risk of transmission of Creutzfeldt-Jakob disease (CJD) in health care settings. The 'Infection Control Guidelines' are a living document and will be updated from time to time.

Download CJD Infection Control January 2013 version here:


Recipients of Human Pituitary Hormones, other people at risk and family members who have lost a loved one to CJD please note:
If you are experiencing any problems accessing health care in relation to Infection Control Guidelines could you please advise the CJD Support Group Network (1800 052466). Patient who are at increased risk of developing cCJD should be aware that current infection control guidelines recommend that instruments used on 'at risk' patients require routinely reprocessing only unless high-infectivity tissue is involved. For procedures involving high-infectivity tissue ie neurosurgery, spinal cord surgery, ophthalmic surgery, pituitary surgery or oro-facio-maxilliary surgical procedures in denistry, additional precautions may be required.

High-infectivity tissues include; Brian, dura mater, pituitary gland, spinal cord, posterior eye (including retina, vitreous humour and optic nerve) cranial and dorsal root ganglia, Olfactory epithelium.

Dentistry; No additional precautions apply for routine dental procedures (including root canal therapy) for people 'at increased risk of developing cCJD'..

Endoscopes; Except for Ventriculoscopes all other endoscopes used on an 'at increased risk of developing cCJD' patient may be reprocessed using routine reprocessing.

There are now screening questions in more hospitals and clinics to identify people with an 'at risk of cCJD status'. and in some cases the recommendations of the infection control guidelines are not implemented correctly by health care workers. The CJD Support Group Network can work with the Department of Health and Ageing together infection control experts to provide additional information to ensure that you receive equity of care. It is beneficial for us to be aware of any problems you encounter so that we can help you and work towards long term resolutions. If we assist you with a problem today this will go a long way in assisting others who may have problems in the future.

Information for Health Care Professionals relating to Infection Control Guidelines for cCJD and other prion disease click here

Information for Hospital Admission Staff click here

Information for people completing a screening questionnaire on CJD prior to admission to hospital click here

Information for family members who have lost a loved one to CJD or for people advised that they are at increased risk of developing cCJD click here


Note: Organ and tissue donation;

Anyone can register as an organ donor but the current infection control guidelines recommend the following;

People considered at high risk should be excluded from donating tissue or organs.

People considered at low risk should be excluded from donating tissue but organised may be allowed to be donated if informed consent is given by the recipient.


Iatrogenic Creutzfeldt-Jakob disease in Australia: time to amend infection control measures for pituitary hormone recipients?

Published in the Medical Journal of Australia September 2010

In September 2010 the above paper was published in the Medical Journal of Australia (MJA). The paper was originally submitted for publication in September 2009
which was unfortunate timing for us as it coincided with the review of the PHTA account. Although publication was delayed until September 2010 a draft copy was
supplied to Professor Magnusson during his review of the trust account and the network. However, as the article was embargoed we were denied any knowledge
of the content and only knew that it contained risk statistics. The paper offers good news in that our risks are diminishing with time but risk estimates
and percentage do not provide more confidence for recipients than is currently already growing and we believe that the paper could have had an adverse
influence on the reviewer’s recommendation when it came to the continuation of the trust account and support for recipients. We strongly believe that until
we can be given a guarantee that no more recipients will develop CJD as a result of the Australian Hormone Pituitary Hormone Program (AHPHP) and until we no
longer experience difficulties when accessing health care, then support and assistance for our cohort needs to be maintained.

Furthermore, the Executive Committee of the CJDSGN, recipients ourselves, had concerns about the accuracy of some of the background history provided in the
paper and although we welcomed the fact that the Australian recipient community is considered to be at a very low risk of developing iatrogenic CJD, and
acknowledge that the paper refers to a possible single discrete contamination event, we do challenge the fact that information available does not clearly identify
higher-risks periods. For those of us informed that we had received a contaminated batch, a batch common with two of the cases and the only batch received
by one of the women, this came as a second and even more devastating blow in 1992 when the DoHA encouraged our treating doctors to recontact those of
us involved to communicate this additional news. It was also our opinion that the paper in no way acknowledged the enormous impact of the notification
on our lives and the lives of our families and we felt compelled to set the record straight. Although we acknowledge that the paper was published to review
risk percentages this data does not bring back those who have died, take away the guilt of the parents who consented to hGH therapy for their children, or change
the devastation and heartache for so many. What happened to us cannot be forgotten and we need to assure that something as devastating as this never
happens again.

We consulted with Associate Professor Steven Collins, our medical director and co-author of the paper and on his advice David Ralston and I submitted a letter to
the editor in response to the paper. It was published in the Medical Journal of Australia in February 2011. Our intention was to set the record straight and correct,
what we considered, were some inaccuracies. This paper does however offer some good news which came about when the MJA inquired during the
publication process what the purpose of the paper was. Recommendations on changes to the infection control guidelines were subsequently included and this
certainly may provide, with time and education, an end to discrimination and delays for recipients of human growth hormone (hGH), treated for short stature, and
recipients of human pituitary hormone gonadotrophin (hPG) as a fertility treatment.

To download 'Iatrogenic Creutzfeldt-Jakob disease in Australia: click here

To download 'letter to Editor and response- published Medical Journal of Australia - February 2011 click here

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