Monthly Archives

August 2016

Important changes to the Australian Red Cross Blood Bank Service protocol on donations from family members of individuals who have had CJD or other prion disease.

By News

By Suzanne Solvyns/ Professor Martin Delatycki/ Dr Christiane Stehmann

What does that this mean for you if a blood relative died of CJD or other prion disease?

A blood relative had a genetic form of CJD or other prion disease:

If your relative died of confirmed genetic CJD or other prion disease you will be deferred from donating blood unless you have undergone predictive genetic testing and had a normal prion protein gene ( PRNP) result (no mutation detected).

A blood relative with confirmed or suspected CJD or other prion disease without testing of the PRNP gene:

If your relative died from confirmed or suspected CJD or other prion disease without PRNP testing on DNA to rule out a mutation for prion disease you will be deferred from donating blood unless you undergone predictive genetic testing and had a normal PRNP result (no mutation detected).

A blood relative with confirmed or suspected CJD or other prion disease with documented normal testing of the PRNP gene (No mutation detected):

If your relative died of confirmed or suspected CJD or other prion disease and diagnostic PRNP testing confirmed that your relative did not have a mutation for genetic prion disease you and other first and second degree blood relatives can donate blood.

 

If I now qualify to donate blood what do I need to provide to the ARCBS?

You will have to provide documentation of PRNP test results, or a letter from a genetic service which confirms that either you, or your relative who died of CJD or other prion disease, had a normal PRNP test result (no proven mutation for prion disease). Once this is logged on the ARCBS database you will no longer be deferred from donating as long as you can fulfill other eligibility criteria.   http://www.donateblood.com.au/eligibility

If you are not sure if testing was been done or your family received the results verbally but have no documentation please call 1800 052466 or email contactus@cjdsupport.org.au.

The ARCBS has advised the following:

To clarify the precise change, the previous guideline stated that prospective donors were excluded if they had a family history of CJD in a first or second degree relative, with the following three specific exceptions:

  1. The relative had variant CJD.
  2. The relative had a recognised iatrogenic cause for their CJD.
  3. The donor has a documented normal genetic polymorphism for PrPc (i.e. in the PRNP gene).

The new updated guideline, as of 13 March 2016, expands the third exception to include the affected relative as well as the donor:

  1. The relative had variant CJD.
  2. The relative had a recognised iatrogenic cause for their CJD.

The donor, or their affected relative (index case), has a documented normal sequencing of the PRNP gene and no abnormal mutation was found.

 

 

9th Annual National Conference- Saturday 12th November 2016

By Events, News

Jasper Hotel, Melbourne

This conference on Creutzfeldt-Jacob disease (CJD) and other prion disease is for CJD family members, people at increased risk of developing CJD and health care professionals involved in patient care or infection prevention and control.

Please join us for a day of bonding, awareness and knowledge!

For CJD family members this is an opportunity to meet other families, share your stories, ask questions of the experts and gain knowledge so that you can promote awareness in the community and amongst local health care professionals. You will also gain insight into what research is happening in Australia and overseas and how we can work together to fundraise and support our research teams.

For health care professionals this is an opportunity to learn more about CJD and prion disease or help by sharing your knowledge and experience. We need champions who help promote awareness and knowledge and those of you who attend are our champions.

We also invite genetic family members or any families wanting more information on genetic testing to register for the genetic meeting on Friday 11th November 2016.

This conference is free for individuals or family members personally affected by CJD or other prion diseases.

CJD Conference 2016 Registration Form

The registration form can be downloaded filled in, saved and returned to us by email to: contactus@cjdsupport.org.au

Registration closes on Friday 4th November 2016.

To book accommodation at the Jasper Hotel please book online www.jasperhotel.com.au and use the code CJD2016 to take advantage of the special rate offered of $145 for deluxe Queen Room. For other room types call 03 8327 2777 and mention CJD conference.