New national network ‘needed’ to win race against dementia

Announced by Federal Minister for Aged Care Ken Wyatt, the ADNet registry and research program will drive research and deliver improvements through five core teams – Registry, Clinics, Trials, Technology and Business – with close links to leading international programs in Europe and the USA.

Minister Wyatt says the $18 million investment will be bolstered by a further $20 million in commitments from the industry, universities, philanthropists, research centres and state Governments.

“It’s estimated 1,700 Australians a week are joining the population living with dementia and without breakthroughs in beating this disease, that figure will reach 650 a day by 2050,” he says.

“Dementia is already the biggest killer of Australian women and the second most common cause of death among the overall population, claiming more than 13,000 lives each year [and] this is the accelerator we need to win the race against dementia.”

The ADNet is expected to :

• Establish a national network of memory clinics to speed assessment of cognitive disorders and improve specialist access for all Australians, through advanced imaging, genetics and lifestyle data
• Register and prepare volunteers for participation in clinical trials and other research programs, by providing them with state of the art diagnosis and tracking their disease trajectory
• Collate and compare data to chart dementia causes, progression and risks and potential new treatments, while supporting research participants and benchmarking clinical care
• Ensure Australian and international data can be shared, providing unprecedented research access to global data and collaboration, to inform prevention, treatment and care.

Dementia Australia Chief Executive Officer (CEO) Maree McCabe has welcomed the initiative, saying 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 explains.

“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.”

Ms McCabe adds that ADNet will also 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,” she says.

“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.”

In addition to the ‘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.

Ms McCabe adds that with dementia as one of the largest health and social challenges facing Australia, research like this is “vital”.

“A national network of memory clinics will provide better coordination 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,” she says.

“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.”

Minister Wyatt stands with Ms McCabe and Dementia Australia, further highlighting the need to tackle the growing issue of dementia across the nation, and the world.

He notes that ADNet will lift the standard of Australian dementia diagnosis and care, with a “coordinated and consistent approach”, while allowing Australia to join the international push to use large-scale national registries to expedite research and beat dementia.

“ADNet means Australia will be a strong contributor to, and an early beneficiary of, the worldwide search for dementia treatments and cures,” he says.

“At present, an estimated 425,000 Australians are living with dementia [and] the potential power of ADNet is our best hope of preventing that number reaching more than one million by 2050.”