For years researchers and advocates have said that dementia research is not given the appropriate priority. Now a major new analysis provides support for their argument.
Just over a third of the number of clinical trials investigating dementia that were expected based on the burden of the disease are underway or planned in Australia, a new analysis has found.
The research, which investigated if clinical trial activity in the nine National Health Priority Areas (NHPAs) reflected the relative disease burden for each condition, found that dementia was “lower than would be expected.”
The analysis found that the proportion of registered trials researching dementia was just 35 per cent of the number that was expected. Similarly, the proportion of planned recruitment to trials investigating dementia was just 28 per cent of the expected number.
The findings lend new weight to the longstanding criticisms from researchers, advocates and consumer groups that dementia research activity is not given the same priority and resources as other major conditions.
Undertaken by six academics at the NHMRC Clinical Trials Centre at the University of Sydney, the analysis included the total number of registered trials and planned recruitment for trials investigating NHPA conditions, registered from January 2008 to December 2012 on two key public trial registries.
Trial activity for each NHPA, measured as a proportion of total trial activity, was compared with the expected trial activity based on the burden of disease for that condition.
The analysis, Australian clinical trial activity and burden of disease: an analysis of registered trials in National Health Priority Areas, was published in the Medical Journal of Australia online.
Responding to the findings, Alzheimer’s Australia CEO Carol Bennett said despite dementia being the second leading cause of death in Australia, it has not had the benefit of clinical trial investment that other areas of chronic disease have had.
“Alzheimer’s Australia welcomed the Federal Government’s $200 million grant for dementia research in the 2014 budget. [However], it is still a fraction of what was received for cancer and cardiovascular research,” she told Australian Ageing Agenda.
“By the 2060s, spending on dementia is set to outstrip that of any other health condition. This increasing prevalence gives the government an economic imperative to invest in clinical trial based research, so that we can work to find treatments that can prolong the onset of dementia, help manage the symptoms and ultimately find a cure,” she said.
Researchers unsurprised
Professor Brian Draper of the School of Psychiatry at UNSW and deputy director of the Dementia Collaborative Research Centre for Assessment and Better Care said that the new results were not surprising.
“For around 15 years, drug trials for dementia, mainly Alzheimer’s disease, have been negative. Many pharmaceutical companies have scaled back their dementia research so there is reduced activity. Treatment of symptomatic dementia has been disappointing so the focus has moved to pre-dementia syndromes but that is only just starting to happen,” he told AAA.
Professor Draper said that dementia trials were difficult to run as they were expensive, labour intensive and difficult to recruit to.
“There is a lot of time commitment required for people with dementia and their carers. The trials are usually a minimum of six months – many go for years.”
He said the increased focus on pre-dementia syndromes helped somewhat but lengthened the time commitment.
“Unless it becomes clear that some new treatment is a ‘game breaker’ I doubt if this will change in the short term,” Professor Draper said.
Similarly, Professor Henry Brodaty, director of the DCRC – Assessment and Better Care and co-director of the Centre for Healthy Brain Ageing, said he was not surprised by the findings. “We had to close our drug trial centre at Prince of Wales after 25 years because of difficulty with recruitment,” he said.
Professor Brodaty said that a national registry of consenting dementia patients would be important way to address this challenge.
Associate Professor Colm Cunningham, director of the Dementia Centre at HammondCare, said the Federal Government’s $200 million over five years, which was not captured in the time period in the new analysis, should help to address some of the imbalance highlighted.
“Clinical research funding into treatments and cures related to the different forms of dementia needs to be complimented by research that demonstrate effective ways to support and empower people who have dementia and their carers throughout the stages of the condition,” he said.
Associate Professor Cunningham also highlighted the NHMRC’s Cognitive Decline Partnership Centre – CDPC, involving HammondCare and other aged care providers, which has a “significant research load that will inform and shape how our Australian citizens with dementia and their carers are supported.”
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