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Dementia research needs the right volunteers © DPUK / Unsplash

Trials readiness

Although dementia is the disorder with the greatest unmet need, over the last 20 years there has been a near 100% failure in the development of new treatments. While many reasons underlie this failure, they centre on an inability to recruit well-characterised individuals – such as those from cohorts. We know so much more about cohort volunteers than the general public which makes them ideal subjects for experimental medicine programmes and early phase trials.

To make possible a new generation of highly targeted clinical studies, DPUK is establishing Great Minds, a register of highly-characterised individuals from cohort studies. It will provide increased academic opportunity and renewed pharma interest in developing new dementia therapies.

How it will work

The three key design elements of the register are:

  • Providing fine-grained risk stratification: Although most studies will need to access individuals at increased risk of dementia, for comparison, access to low-risk individuals will also be required. Of greatest interest are individuals with brain imaging, particularly if the brain imaging has been repeated. However, individuals with existing cognitive data are also highly informative.
  • Access to existing data: Great Minds will access a limited number of variables relevant to dementia risk from cohorts. These will include age and family history of disease (including dementia), selected genetic information, selected lifestyle data (exercise, smoking, and alcohol), MRI scans, mood and cognition. These will be used to inform risk stratification algorithms and implement inclusion and exclusion criteria for proposed clinical studies.
  • Web- and smartphone-based enhancement of existing data: The value of tGreat Minds lies in its ability to characterise early disease status and progression which can be highly variable. Great Minds participants take six-monthly online assessments of cognition, mood and everyday functioning which captures individual trajectories. This data will be made available to cohorts.