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

By 25/10/2021News

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.