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People power: the volunteers behind dementia research

New figures from the National Institute of Health and Development released today shine a light on dementia research and the growing number of everyday people committing their time and biological information to help tackle the disease. MRC Director of Science Programmes Dr Rob Buckle looks at why cohort studies are so important in getting underneath the skin of the disease.

Group of people waving at the camera

The number of people taking in part in dementia research is up by at least 60% in the past year, according to figures released today by the National Institute for Health Research (NIHR).

Champagne corks will be popping in labs across the country. There’s so much about dementia that we still don’t understand: who is at risk of developing dementia and why the progression of the disease varies from person to person; the anatomy of the disease itself; how we can develop new medicines to treat its progression and improve symptoms; and how we can make accurate diagnosis easier.

The rise in participants of dementia research has come from both dementia patients and healthy volunteers.

While you might think that only dementia patients are useful, we can only tease out the answers to these questions by understanding the lives of healthy people and what healthy ageing looks like too. For researchers working in this area, the biological health and lifestyle data of these people is like gold dust.

Large-scale medical research population surveys are one of the UK’s most valuable assets. One in 30 people in the UK are currently involved in medical research, of all types, through cohort studies.

Cohort studies identify a group of people and follow them over a period of time to see how their genetics and lifestyles affect their health. Each cohort, and some have been running for many years, contains a wealth of data that can be used to study a wide range of health risk factors and outcomes – including dementia.

Indeed, the ability to bring such a rich dataset together and analyse it in novel ways using the increasing computational power at our disposal, offers real opportunity to gain new insights into what causes and progresses dementia.

The Medical Research Council plays a major role in international dementias research, investing around half of the total annual government budget of £66 million into research in this area. Cohort studies are the backbone of our work.

Last year we set up the Dementias Platform UK (DPUK) – a £53m powerhouse for dementias research which brings together the world’s leading dementia researchers, with the world’s largest population study data, and the very latest technology, to better understand, treat and eventually prevent dementia.

Pulling together more than 30 UK cohort studies, which covers more than two million people, DPUK creates the world’s largest study group for use in dementias research. It will be these millions of people that give up their time and health information that will, in the end, help to unlock the door to better dementia treatments and perhaps one day prevention.

It’s seems right that the last word on this should come from a volunteer involved in one of our cohorts – the world’s longest running cohort called the MRC National Survey of Health and Development – which will be turning 70 next year and is now looking at early signs of dementia. When asked what it feels like to be part of the research, he said “It’s satisfying. It feels good to be part of it. A truly worthwhile cause”.

To all the volunteers up and down the country involved in medical research, thank you –thank you very much.

Rob Buckle

One Comment Post a comment
  1. Anyone, with or without dementia, can sign up to http://www.joindementiaresearch.nihr.ac.uk to express an interest in volunteering for dementia research.

    August 17, 2015

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