Now, the information available on participants is being enhanced with the addition of genetic information and data on volunteers’ day-to-day activity.
Saliva kits and actigraphs will be sent to all Great Minds members who have given their consent for this type of testing. The information collected will give researchers greater specificity when recruiting participants to new studies and trials in dementia.
Genetic information gleaned from the saliva kits will include APOE status. The APOE gene has several types, of which APOE4 is associated with a higher risk of developing Alzheimer’s disease. Participants in this exercise will not, however, be told which gene they carry – partly for ethical reasons, and partly because the presence or absence of a particular gene does not guarantee whether or not someone will go on to develop Alzheimer’s. Data will be stored on DPUK’s secure genetics platform, part of its Data Portal.
The wrist-worn actigraphs will be worn by volunteers for a seven-day period and will collect information on their pattern of daily activity and sleep. Recent research has identified sleeping too little or too much as a risk factor for developing dementia in later life.
All this information will help researchers recruit to trials with more precision, enhancing their ability to tell whether particular therapeutic interventions or diagnostic techniques are working.
Dr Ivan Koychev, Senior Clinical Researcher at DPUK and Great Minds lead, said: ‘Great Minds already features a host of useful information on volunteers, from the data collected as part of their original research cohort to the additional cognitive tests and questionnaires we run on a regular basis. It is important that researchers can recruit the right people at the right time for their studies, and the addition of genetic and activity data on our Great Minds participants will help them do that.’
Great Minds is an opt-in pool of more than 6,500 highly characterised research volunteers from existing DPUK-affiliated cohort studies and the nationwide Join Dementia Research register. These volunteers undergo regular additional assessment of memory and thinking abilities, and have expressed their willingness to take part in experimental medicine studies and clinical trials for dementia.
Ongoing studies involving Great Minds volunteers include a collaboration between researchers from Oxford University and the health technology company Five Lives investigating whether a new mobile app is effective in remotely measuring cognition among healthy adults – helping detect the risk of cognitive decline and dementia as we age.
Another study, by researchers at Oxford University and King’s College London, is assessing the use of remote monitoring technology such as fitness watches in detecting impairments in people’s ability to function in day-to-day life.