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Join dementia research

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Professor Martin Rossor, NIHR National Director for Dementia Research
Today Join Dementia Research celebrates its fifth birthday.

There is much to celebrate. Although still young, the service has already had a lot of success – making it easier for people to take part in research. You can see just a few highlights from the past five years below.

Thank you so much for all your support. Whether or not you have yet taken part in a study, your generosity and passion is what allows Join Dementia Research to help advance dementia care and treatments.

However if we want to continue to make a difference, beyond our sixth, seventh, or even tenth birthdays, we need even more people to get involved. That’s why we’re asking everyone to tell at least one other person about the opportunity to take part in research.

To help you spread the word, we’ve created a digital greetings card that you can send to someone you know who might be interested in research.

The more people who register with Join Dementia Research, the faster we can make a difference to the lives of everyone affected by dementia.

Thank you.

Professor Martin Rossor
NIHR National Director for Dementia Research

Send a greetings cardWe’re not asking for gifts or cards for our fifth birthday. Instead, you can help us celebrate by sending this card to someone you know who might be interested in research.

It could be a friend or family member. 34.5 million of us in the UK know somebody with dementia. Imagine the difference we could make if we all told just one person about Join Dementia Research.

Who will you send a card to? It could be someone living with dementia, a carer, a loved one, or anyone else you think should be aware.

> Please help spread the word

5 reasons to celebrate Join Dementia ResearchWe’ve had many successes since we launched, so to mark five years of the service, here are five highlights:
1. Supporting improvements to treatments and care

27,807 participants have now been placed in studies thanks to Join Dementia Research.  This includes drug studies, such as the ENGAGE study investigating whether Aducanumab may help slow Alzheimer’s disease, as well as online studies like the Global Brain Health survey. These studies will help scientists to develop effective treatments, find better ways to diagnose the conditions, and improve quality of life both for people who have dementia and for their families.
2. Putting patients in the driving seat

From the very beginning, Join Dementia Research has listened to the voices of those with direct experience of dementia. Before the service even launched, a team of ‘public champions’ came together to discuss how it should work, and what the priorities should be. This team was made up of people living with dementia and carers. They helped shape Join Dementia Research before it launched, and have continued to guide the service ever since.
3. Bringing people togetherJoin Dementia Research doesn’t just bring together volunteers and researchers. The service only exists because so many dedicated people have come together to collaborate.

The service connects NHS and private health and social care organisations, universities, GPs, psychiatrists and neurologists and many other healthcare professionals all around the country.

What’s more, the UK’s three biggest dementia charities have united with the NIHR (National Institute for Health Research) in order to make Join Dementia Research possible.

Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland play a vital role. Not only do they help promote the opportunity to take part in research, they also run helplines to answer any questions about the service, and help people to manage their accounts.

4. Encouraging conversations about research

The National Institute for Health and Care Excellence (NICE) recommends that all people with dementia should be provided with information on research studies they could participate in, so they can make their own decisions about getting involved. That’s why last year we launched the Join Dementia Research awareness tool, to provide healthcare professionals with the skills and knowledge they need to have conversations with patients about taking part in research.
5. Getting more people involved

Over 45,000 volunteers have now signed up to Join Dementia Research. Simply by registering their interest, they have let researchers know who is available, helping them to best plan their studies. However there are still too many people who don’t know about the opportunity to take part in research. That’s why we need your help. For our birthday, the best gift you can give us is to help spread the word so we can make an even greater difference in the next five years and beyond.
Join Dementia Research in numbers

These statistics are accurate as of 31 January 2020.

Copyright © 2020 Join Dementia Research. All rights reserved.

Our mailing address is:
Join Dementia Research
c/o NIHR Clinical Research Network Coordinating Centre
Minerva House
5 Montague Close
LONDON
SE1 9BB

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