Volunteering for research
For dementia research to progress, we need volunteers to take part in studies and clinical trials.
There are different ways that you can volunteer for research, depending on how you would like to contribute and whether you are already part of what is known as a 'cohort study'.
Cohorts are groups of people from whom researchers collect data over a long period of time. This is called longitudinal data. The data collected can be anything from biological samples (such as DNA) to lifestyle questionnaires, which are repeatedly gathered at regular intervals.
Researchers choose a particular topic to focus on (for example, whether there is a link between dementia and diabetes) and pick out the relevant data from the wider information available about a cohort. Because so much varied data is collected about the same people, it allows scientists to investigate the links between a wide array of different things.
Many scientists use cohort data to explore which of a person's features might contribute to the development of dementia. They do this by taking the people in a cohort who have dementia and going back in time to see what similarities they share that could have caused it.
The DPUK Data Portal contains over 50 cohorts with millions of health records that any researcher can apply to use for free to study dementia – and it's all thanks to the hundreds of thousands of people who volunteered to be in the cohorts.
Am I eligible?
Dementia research needs people both with and without a diagnosis of dementia so that researchers can understand why some people develop dementia while others don't.
Some studies only recruit people who have specific characteristics, like Alzheimer's disease or diabetes, so that they can investigate that in more detail.
Studies may also have 'exclusion criteria', which are a list of things that they don't want in their participants because it could have an effect on what is being studied. For example, many research studies can't include people with several conditions because they wouldn't be sure which of them is producing the results.
Hear first-hand from some of the volunteers who are taking part in research that will help beat dementia:
- Sally Harbourne from the New Therapeutics in Alzheimer's Disease study.
- Marianne Talbot from the English Longitudinal Study of Ageing cohort.
- Andy and Tish Bird from the New Therapeutics in Alzheimer's Disease study.
- Bernard Clarke from the Deep and Frequent Phenotyping study.
How to register your interest
Join Dementia Research (led by the National Institute for Health and Care Research) welcomes anyone over the age of 18 to volunteer for research. Find out more and sign up on their website.
If you are part of a cohort study already, you may be able to join DPUK's Great Minds register. Find out more about joining Great Minds.
You can also register directly for the following DPUK studies:
The New Therapeutics in Alzheimer's Disease study is seeking volunteers. You can find out more and register your interest here.
The Deep and Frequent Phenotyping study – the world's most in-depth study into early Alzheimer's disease – is recruiting participants at sites around the UK. Find out more and register your interest here.