A dementia breakthrough,
powered by you

About

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.

⟶ How it works

⟶ Why sign up

What StepUp for Dementia Research does

  • StepUp for Dementia Reserch is an inclusive Australian research hub that gives everyone aged 18 and over the opportunity to participate in research
  • The service is free for researchers to use; its database will be available to anyone conducting ethically approved dementia studies
  • The service allows you to donate time (as much or as little as you 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: participants can sign up with just a few clicks and opt out at any stage

A note on our logo

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.

Dementia Research Recruitment Platform Global Collaborative

Purpose

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.

Current Members:

  • Chair, Professor Yun-Hee Jeon, AUSTRALIA: StepUp for Dementia Research (University of Sydney) established in 2019
  • Professor Martin Rossor and Mr Adam Smith, UK: Join Dementia Research (NIHR, UCL) established in 2015/16
  • Professor Philip Scheltens and Dr Marissa Zwan, NETHERLANDS: Brain Research Registry (Hersenonderzoek, Amsterdam UMC, VU University) established in 2017
  • Dr Jessica Langbaum, USA: Alzheimer’s Prevention Registry (Banner Health) established in 2012 and its GeneMatch established in 2015
  • Dr Keith Fargo, USA: TrialMatch (Alzheimer’s Association) established in 2010
  • Assistant Professor Rachel Nosheny, USA: Brain Health Registry (UCSF) established in 2013/14
StepUp for Dementia Research

StepUp for Dementia Research

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

Join Dementia Research

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.

Dutch Brain Research Registry (Hersenonderzoek.nl)

Dutch Brain Research Registry (Hersenonderzoek.nl)

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.

Alzheimer’s Prevention Registry and GeneMatch

Alzheimer’s Prevention Registry and GeneMatch

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

TrialMatch

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

Brain Health Registry

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.