$18m registry to put the pedal to the metal on dementia research

Monday 2 July 2018

Dementia Australia has today welcomed the establishment of the Australian Dementia Network (ADNet), a registry and research program that will accelerate dementia research in Australia.

Dementia Australia CEO Maree McCabe said Australian researchers, Dementia Australia and people impacted by dementia have long held a vision for an integrated registry of researchers, studies, information, data and clinicians to ensure there is more targeted, effective research.

“The Federal Government’s commitment of $18 million will make this vision a reality,” Ms McCabe said.

“For researchers, ADNet is about harnessing the power of ‘big data’ to ensure that we have a far more comprehensive and integrated picture of clinical research that will provide a more comprehensive picture of the characteristics of dementia.

“It will enable that picture to be built across a wide range of datasets and for researchers to more effectively identify cohorts of people for future studies.

“ADNet will enable dementia researchers, clinicians, health service providers, industry and, most significantly, people living with dementia, their families and carers to work smarter together to provide better care for now, and for a future cure.

“Combining forces will also better position Australian dementia researchers internationally to contribute more effectively and with more clarity to the global puzzle of dementia.”

“Dementia Australia advocates for research studies and programs to actively collaborate with people living with dementia throughout all phases of research and it is pleasing to see that the ADNet registry and research program will make this a priority.”

John Quinn, who is living with dementia, said the new Australian Dementia Network announced by the Federal Government today, is a commitment to all people impacted by dementia that they will be invited to the research table – that they, we, will be contributing to the future.

“In the past two years, I have not only participated in some studies, but I am also on numerous research committees,” Mr Quinn said.

“I am proud that I can contribute to this progress towards better care now and a future cure. I believe this is a major shift forward for dementia research and for all people impacted by dementia.”

In addition to this ‘big data’ approach to research, a further benefit of ADNet will be the establishment of a national network of memory clinics to better assess cognitive disorders and improve specialist access.

“A national network of memory clinics will provide better co-ordination of research around the country, improve our ability to track, benchmark and report on the quality of clinical care of those people living with dementia and provide unprecedented research access to large scale data sets that can help to inform the prevention, treatment and care of dementia,” Ms McCabe said.

Dementia is the second leading cause of death of all Australians and the leading cause of death of women.

In 2018, dementia is estimated to cost Australia more than $15 billion and this is expected to increase to $36.8 billion in 2056. Currently, an estimated 250 people join the population with dementia each day.

Ms McCabe said dementia was one of the largest health and social challenges facing Australia and research into dementia was vital.

“The establishment of the ADNet registry and research program will improve access to more timely diagnosis and specialist services for people impacted by dementia, ensuring that they can put in place strategies that will enable them to live better with the disease.”

The Australian Dementia Network will be funded by the NHMRC National Institute for Dementia Research (NNIDR) through the Boosting Dementia Research Initiative, a 5-year $200 million investment by the Australian Government.

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Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and carers. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia is the new voice of Alzheimer’s Australia. Dementia Australia’s services are supported by the Australian Government.

National Dementia Helpline 1800 100 500

Interpreter service available

(The National Dementia Helpline is an Australian Government Initiative)

Dementia is a National Health Priority Area

www.dementia.org.au

Media contacts: Christine Bolt 0400 004 553, christine.bolt@dementia.org.au or Monika Boogs 0407 019 430, monika.boogs@dementia.org.au

When talking or writing about dementia please refer to Dementia Language Guidelines.