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 Dr Claire Shaw, UK: Join Dementia Research (NIHR, UCL) established in 2015/16
  • 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 Stephen Hall, USA: TrialMatch (Alzheimer’s Association) established in 2010
  • Assistant Professor Rachel Nosheny, USA: Brain Health Registry (UCSF) established in 2013/14
  • Professor Van Ta Park, USA: Collaborative Approach for Asian Americans, Native Hawaiians and Pacific Islanders Research and Education (CARE Registry) established in 2o2o
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 awareness service that generates customized lists of studies based on user-provided information. Volunteers can easily see what studies they may qualify for in TrialMatch’s continually updated database of more than 750 studies, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted at locations around the world 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.

CARE Registry

CARE Registry

CARE Registry aims to give Asian American, Native Hawaiian and Pacific Islander (AANHPI) individuals in the United States a voice and opportunities to participate in health research through enrollment in CARE. CARE supports participation in research studies that focus on Alzheimer’s disease and related dementias, aging, caregiving, and other health issues across the lifespan among AANHPI populations.