20 February 2021

Research news

StepUp for Dementia Research is a research participation and engagement service.  It connects individuals, both with and without dementia, with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure.

One of the biggest global challenges for dementia researchers is finding the right people to participate. There remains a lot of stigma around dementia, and often people do not feel comfortable talking about it.

For researchers, recruiting participants for dementia-related studies is costly and time consuming. Delays finding the right people can result in studies taking longer to deliver, often requiring funding extensions.

Insufficient study samples limit the effectiveness and scope of research. The difficulty researchers face recruiting participants directly impacts their capacity for robust analysis and the generalisation of findings.

In 2015, a government-funded public engagement platform called Join Dementia Research (JDR) launched in the UK to tackle this challenge. To date, JDR has attracted over 47,540 volunteers, facilitating 46,460 volunteers who have joined studies across more than 295 research sites.

Leveraging the experience and knowledge of JDR, and in partnership with its developers from University College London and University of Exeter, Professor Yun-Hee Jeon of the University of Sydney has led the establishment and early implementation of StepUp for Dementia Research.

The early implementation of this service is funded by the Commonwealth Department of Health.

Since its official launch in June 2019, StepUp for Dementia Research has attracted over 1,100 volunteer registrations and is currently supporting a number of research teams across Australia.

Features of StepUp for Dementia Research that sets it apart:

-  An inclusive Australian research hub that gives everyone aged 18 and over the opportunity to participate in research,
-  Free for researchers to use; a matching service will be available to anyone conducting ethically approved dementia studies,
-  Australians can donate time (as much or as little as they want to) rather than money,
-  It places the value and potential of people with dementia at the centre of the solution,
-  Registration is simple and flexible - with a few clicks participants can sign up to be contacted and opt out at any stage.

StepUp for Dementia Research will improve recruitment into research studies, which has the potential to save millions of dollars and fast-track dementia research.

More information: stepupfordementiaresearch.org.au or 1800 7837 123