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A new paper details what the DPUK volunteer recontact register is and how it can be used by researchers to recruit highly characterised participants to brain health studies.

An electronic list on a computer screen.
The DPUK volunteer recontact register is a list of people who are happy to be contacted about participating in future research.

The paper, newly published in BMJ Open, explains that the DPUK volunteer recontact register is a research infrastructure that contains people who are happy to be contacted to take part in future brain health research. A key strand of DPUK’s work, the register aims to accelerate this research by connecting researchers to individuals with a wealth of medical data.

It consists of two twinned components: Great Minds (GM) and Clinical Studies Register (CSR). While both allow researchers access to highly characterised individuals, they differ in that GM requires participants to actively sign-up to being contacted about brain health research on the basis of their dementia risk. In contrast, CSR does not require such sign-up as its participants originate from a study which already obtained their agreement to be re-contacted for future studies.

Participants in GM are required to create a membership profile on the GM website with their basic demographic and medical information. In order to join, participants must be over 18 years of age, originate from a DPUK cohort that has agreed to offer GM, and have the capacity to provide informed consent. This unfortunately means that people with more advanced symptoms of dementia who have lost capacity cannot be included. DPUK is in the process of developing a solution for these individuals through the Trials Delivery Framework, a nationwide network to match the right volunteers to the right studies.

Once an individual is part of GM, they will be required to complete an online questionnaire including memory, mood and medical assessments every six months. These regular tests keep the information on GM up to date and standardised regardless of which DPUK cohort participants are from. As well as the questionnaires, GM members are offered genetic tests for genes common in dementia, like the APOE4 gene subtype. They are also offered a test called an actigraph, which measures their activity over a period of seven days via a wrist-worn device.

The combination of the data provided by GM participants directly plus the wealth of medical data available from their original study makes them highly characterised. This enables researchers to identify those most at risk of developing dementia to investigate methods of early treatment. Intervening in the dementia process before it causes irreversible damage is thought to hold the key to stopping the disease.

The abundance of available data on each GM member also allows researchers to confidently select participants that would be most informative in a brain health study. Researchers can check how many participants would fit the criteria for a study by accessing the GM and CSR Feasibility Tools. These tools estimate the number of people appropriate for a particular study within a certain geographical area in the UK.

Launched in January 2018, GM now contains over 4,000 participants who have agreed to be contacted to take part in brain health studies according to their risk for dementia. In addition, the CSR allows re-contact of over 53,000 more participants who have already consented to be contacted about future research through their participation in two DPUK studies.

GM and CSR overcome a costly and time-consuming hurdle for dementia research: participant recruitment. Lead author Dr Ivan Koychev, Clinician Scientist at DPUK and Oxford University, explains why this is so important: ‘The lack of new drug treatments for dementia after lengthy and costly experiments means this area is not appealing for pharmaceutical companies. However, solutions such as the DPUK re-contact register slash the time and money needed for dementia research, so we’re now seeing renewed interest from investigators.’

The creation of GM and CSR marks a new opportunity to establish the UK as a world leader in brain health research through leveraging the power of data-rich volunteers committed to accelerating dementia research.