Were you aware that dementia is the second leading cause of death in Australia? More research is needed to better understand this insidious disease and its effects upon an ageing population. However, finding willing people for trials and research can be difficult for academics with a preliminary review of the Australian and New Zealand Clinical Trials Registry finding that of terminated dementia clinical trials, three in five ceased due to recruitment difficulties.
Now a new website has been developed that matches participants and researchers. Using a similar approach as dating apps participants are matched to researchers based on features that academics need for their studies, such as age, location and diagnosis. The site is called Stepup for Dementia Research. Its program director is Yun-Hee Jeon.
Jeon has seen trials fail first hand and believes that the stigma surrounding dementia is hindering recruitment, hurting those who need help the most.“In my own experience I have seen trials delayed by over a year and budgets blown out due to an inability to find the right research participants. StepUp for Dementia Research is set to change this,” she said.
StepUp for Dementia Research is supported by funding from the Australian Government Department of Health under the Dementia and Aged Care Services Fund. It is delivered by the University of Sydney and was developed in partnership with the University of Exeter and University College London.
When researchers register their studies, they define the kind of people they’re looking for and the StepUp for Dementia Research system matches that description to the information provided by registered volunteers. Researchers can only see participants’ details that match their criteria. If they deem a registered participant is suitable they will contact them direct to explain the research and ask if they would like to participate.
Anyone over the age of 18 can register, whether living with dementia or not. Health and aged care providers are encouraged to refer suitable people to the website and a range of promotional materials, such as brochures and posters will soon be distributed by Sydney University.
Jane Thompson was a carer for her husband Alan who had Alzheimer’s. She found the experience very challenging and difficult and now advocates for more research into dementia. She said “I would really encourage people to participate in research studies – and also to consider contributing to the research process more broadly to help ensure that the focus is on areas most likely to impact the lives of whom the research is about.”
Thanks to Aged Care Insite. Listen to their interview with Yun-Hee Jeon.