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Suzanne

A comprehensive review of the CJD Support Group Network (CJDSGN) and Australian National CJD Registry (ANCJDR)

By News

A comprehensive review of the CJD Support Group Network (CJDSGN) and Australian National CJD Registry (ANCJDR) was undertaken by PricewaterhouseCoopers (PwC) earlier this year on behalf of the Commonwealth Department of Health (Health).

The final result of that review was posted on Health’s website: CJD Review Final Report (pdf link)

We would like to thank all of you who contributed in any way to the positive outcome from this review.

Human pituitary hormone (hPH) recipients were contacted directly by Health and asked complete a survey and many were interviewed. CJD families in Australia we asked by the CJDSGN to complete a very short survey conducted by the CJDSGN and the results were provided to the review team. We were asked by the review team to provide the names of stakeholders from both Australia and overseas and we understand extensive interviews were conducted.

The review team was interested in the work in Australia of the CJDSGN in supporting and assisting all affected by prion disease and the ANCJDR in providing surveillance and research. They also showed interest in the collaboration and interaction of both the CJDSGN and the ANCJDR with the global prion community. The review certainly endorsed and confirmed the important roles and contributions of both the CJDSGN and the ANCJDR provide for public health in Australia and on an international level.

Contracts, to support future funding, have now been confirmed for both the CJDSGN and the ANCJDR and we are both in the process of submitting an application to seek some changes to the current contract consistent with the recommendations of the review.

For the CJDSGN the most important change we want to see is an expansion of our funding criteria. We have in the past been funded through a special account only to support human pituitary hormone recipients (hPH) but as you all know our scope of work is much wider than that and all Australians affected by prion disease are reliant on the work we do.

Thank you again and we are confident that due to your support we will be able to continue our work in supporting Australians affected by prion disease.

CJDSGN Zoom Meeting 23/10/21

By Events, Meetings, News

You are invited to attend a CJD Support Group Network (CJDSGN) Zoom meeting.

  • Date:  Saturday 23rd October 2021
  • Time:  2:30pm- 4:30pm (AEST)
  • Please email contactus@cjdsupport.org.au to register your interest.
  • Attendees will receive the login link by Monday 18th October 2021

Hosted by:  Suzanne Solvyns and David Ralston representing the Committee of the CJD Support Group Network.

Guest Speakers: Dr Christiane Stehmann and Dr Matteo Senesi – Australian National CJD Registry (ANCJDR).  ‘An update on surveillance, research and improvements to diagnostic tests in particular RT-QuIC’.

There will also be an update on AOS clinical trials that are due to commence in 2022.

There will be time allocated for Questions and Answers during the second half of the meeting. If you have specific questions you can email and register your question ahead of time so that we can ensure that you do get answers to any questions.