StepUp for Dementia Research is a research participation and engagement service, a “one-stop shop” that connects individuals – both with and without dementia – with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure. We make it easier for the brightest minds in research to connect with people willing to donate their time.
Currently, there is no systematic and inclusive way in Australia for people with dementia to express their interest in participating in research. For researchers, recruiting participants for dementia-related studies is costly and time consuming. Delays in 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 when it comes to recruiting participants directly impacts their capacity for robust analysis and the generalisation of findings.
The initial launch of StepUp for Dementia Research will cover New South Wales and Western Australia, ahead of nation-wide scaling in the coming year.
The StepUp for Dementia Research logo was designed by branding agency BrandMatters, in consultation with the StepUp for Dementia Research team and members of the Public Involvement Panel. It represents a sun whose rays form the shape of the Australian continent. At the centre of the logo is the research participant, and the rays (which also evoke ripples in water) are the other StepUp for Dementia Research stakeholders: researchers, health and care professionals, carers, loved ones and the general public.
The ripples evoke the knock-on effect of stepping up to participate in research: the value provided for other people and generations to come.
The main purpose of the collaborative is, leveraging the experience and knowledge of the member organisations, to generate new insights and evidence that can help further enhance the service provision and potentially support other similar global initiatives.
StepUp for Dementia Research is an online, postal and telephone service that connects people interested in dementia research with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure. Anyone aged 18 and over – both with and without dementia – can register their interest. The software matches participants who have the relevant characteristics (age, diagnosis etc), with researchers looking for those characteristics in their study participants.
Join Dementia Research is a national service which allows members of the public to register their interest in taking part in dementia research studies. The service matches interested volunteers with researchers who are seeking participants for their studies. The goal is to make it possible for anyone who wants to be involved in dementia research to get the chance to do so.
Hersenonderzoek.nl accelerates brain research by matching volunteers to neuroscience studies. Anyone aged 18+, healthy people and patients alike, can create a profile on the online platform. The team behind Hersenonderzoek.nl helps Netherlands based brain researchers to quickly find the participants they’re looking for, by pre-screening and inviting people from the registry for their studies.
The Alzheimer’s Prevention Registry and its GeneMatch program connects people who are interested in participating in Alzheimer’s-focused studies with research opportunities taking place in their community or online.
TrialMatch is a clinical studies matching service that generates customised lists of studies based on user-provided information. Volunteers can easily see what studies they may qualify for TrialMatch’s continually updated database contains more than 250 studies, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted at sites across the country and online.
Brain Health Registry is a web-based, observational research study designed to effectively capture extensive amounts of data that may enable researchers to more efficiently identify, assess, and longitudinally monitor the cognitive changes associated with the progression of neurodegenerative diseases and brain ageing. One of the goals of the Brain Health Registry is to assist with recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies.
