Five years on from the national launch of Join Dementia Research, we look back at the service’s incredible impact and some of the exciting research taking place that you could get involved in.
What is Join Dementia Research?
Alzheimer’s Research UK has been a charity partner of the service since it was launched. Alongside Alzheimer’s Society and Alzheimer Scotland, the National Institute for Health and Research set up the service to help the public get involved in dementia research.
Join Dementia Research has sped up the recruitment process to researchers’ studies. And it’s furthering scientific understanding of dementia and shaping the treatment and care of people living with dementia today, and in the future.
Over 46,000 people have registered with the service, with over 27,000 having already taken part in a study. When someone gets involved in research, they may be asked to do an online questionnaire, change their diet or physical activity habits, have a brain scan or trial a new drug.
National Institute for Health and Research, February 2020
Studies that have recruited via Join Dementia Research
Here are some examples of completed and current studies that have volunteers via the service. These studies have increased our understanding of diseases like Alzheimer’s and will help shape further research to find better ways to diagnose, prevent and treat dementia.
Brains for Dementia Research
Researchers often need to use donated brain tissue to closely investigate the diseases that cause dementia. Brains for Dementia Research asks volunteers with and without dementia to take part in regular clinical assessments and then to donate their brains when they die.
With help from recruitment through Join Dementia Research, over 3,200 people have registered. The data collected from volunteers via questionnaires, blood samples and their medical notes has allowed detailed profiles of the participants to be built up. Alongside the donated brain tissue, this provides a fantastically rich resource that is shaping understanding about the complex way diseases like Alzheimer’s develop over time.
Pharmaceutical company Biogen ran clinical trials to test whether the drug aducanumab could delay the progression of Alzheimer’s disease for people in the early stages.
The ENGAGE trial recruited volunteers through the service, with 25 people successfully taking part via the service.
Following promising results from the trial announced at the end of last year, Biogen are now filing for approval for aducanumab to become a licenced treatment for Alzheimer’s.
Shaping future treatments survey
Last year Alzheimer’s Research UK launched a survey to better understand which aspects of daily life people find most important to them, and what they would wish to protect if they were to develop a disease that causes dementia. For example, maintaining the ability to drive or to be able to continue to communicate well with their loved ones.
Currently new treatments are assessed on their ability to alter markers of disease, improve performance on memory and thinking tests and impact a person’s day-to-day life. However, there is little information about the aspects of daily life that are valued most highly by those with dementia or those who might be facing the condition in the future.
Around 5,800 people took part in the study with roughly a third of these being recruited through Join Dementia Research. The results will help inform regulators tasked with assessing the next dementia treatments and will be shared with researchers who are working to develop future treatment approaches.
National Institute for Health and Research, February 2020
The PROTECT study is looking for 50,000 people to take part in its long running research. The aim is to improve understanding about how the brain ages and how factors such as exercise and diet might affect our risk of dementia.
The study is looking for people over 50 across the UK to complete annual assessments online. These include thinking and memory tests, lifestyle questionnaires as well as providing a DNA sample via a postal cheek swab.
This study will provide valuable information about how the brain changes over time, which combination of factors such as exercise and diet really work to reduce our risk, and how we can best encourage people to adopt these changes.
The demenTia Research And Care Clinic (TRACC) will follow people with and without a dementia diagnosis in Norfolk and Suffolk. Volunteers will have brain scans, blood samples, and undergo cognitive assessments.
This research will help health professionals improve the accuracy in telling symptoms of diseases like Alzheimer’s, frontotemporal dementia and motor neurone disease apart. This will inform how best to manage these conditions and hopefully improve future drug trials.
To take part, volunteers with dementia must have a person who knows them well to support them.
How can you get involved?
Thanks to research we understand more about the brain, and the diseases that cause dementia, than ever before. Scientists have only been able to make this progress because of the thousands of people who have taken part in research studies. While this anniversary is an important milestone, we still have work to do. With new studies added to every week, there are always opportunities for participants, and we encourage anyone over 18 in the UK to register.
To date, we’ve registered 7,360 people to the service via our Dementia Research Infoline which was set up to support the launch of Join Dementia Research. Registering is quick and easy and can be done online at www.joindementiaresearch.nihr.ac.uk
To find out more about the service or to register over the phone, contact our Dementia Research Infoline on 0300 111 5 111 (9-5pm Monday to Friday, calls charged at local rates) or email firstname.lastname@example.org