A nationwide online and telephone service helping people take part in dementia research studies has been launched – the first of its kind in the UK.
The ‘matchmaking’ scheme is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland and is funded by the Department of Health and will be implemented locally through the NIHR Clinical Research Network: Yorkshire and Humber.
A new national poll showed that almost two thirds (62%) of the general public are willing to take part in dementia research; however, more than four out of five people (81%) didn’t know where to begin when thinking about volunteering.
The innovative new service will boost research participation by connecting people interested in research to suitable dementia studies across England, Scotland and Wales and promises to accelerate the pace of dementia research. This will allow people with and without dementia, to register their interest in studies and help researchers find the right participants at the right time.
The joindementiaresearch.nihr.ac.uk website offers a secure and easy way for individuals to register their interest, discover studies that interest them, and ultimately connect with researchers to take part in their studies. Individuals do not have to take part in any studies when registering with the service, and can opt-out at any time.
By signing up to the service, people give permission for researchers to contact them with details of a variety of dementia studies in their area that match their profile, it is the individuals decision as to whether they wish to participate on any of these on a case-by-case basis. Those aged 18 years or over can sign up themselves, or on behalf of someone else, either by registering online or by contacting the helplines of Alzheimer’s Research UK (0300 111 5 111) and Alzheimer’s Society (0300 222 1122).
Dr Daniel Blackburn, Consultant Neurologist at Sheffield Teaching Hospitals NHS Foundation Trust and Honorary Senior Lecturer at the University of Sheffield, said: “We are pleased that Join Dementia Research will improve access for people with dementia to take part in research which is crucial to find new treatments and improved diagnostic tests.
“In Sheffield we are already recruiting to a study called IDEAL (http://www.idealproject.org.uk) which is using Join Dementia Research to help recruit. The IDEAL study is looking at how people cope with dementia and what can be done to improve the lives of people with dementia. This nationwide study is using Join Dementia Research to recruit and we hope it will help recruitment for this study.
“There are several other studies on dementia in Sheffield, in particular VPHDARE@IT (http://www.vph-dare.eu) which is a European study looking at risk factors for dementia and improved imaging to detect dementia. We are also registering this study to utilise Join Dementia Research.”
Prof Martin Rossor, the NIHR National Director for Dementia Research, said: “The government and charities have increased funding for dementia research over the last few years, meaning more studies are being done than ever before, but it’s often difficult to find willing volunteers at the right time.
“Join Dementia Research offers a way of “match-making” – linking volunteers to researchers. The system also helps us plan future studies. It’s important that everyone should be able to find out about research that is happening near to where they live and get the opportunity to be part of that research. Growing the number of willing research volunteers will help push forward research to make advances in treatment, prevention and care.”
Professor Esme Moniz-Cook, Dementia lead for the NIHR Clinical Research Network: Yorkshire & Humber said: “If we are going to place people with dementia and their families at the centre of our publicly funded research studies, and really understand what works for who, given their varied needs, then we need to ensure that NHS patients and their families from across the country – including the often forgotten communities in Yorkshire and Humber are offered the opportunity by dementia researchers, to contribute to high quality studies.
“I am delighted that this Join Dementia Research initiative has great potential to empower people with dementia and families, to contribute to dementia research .The service will allow us to see more meaningful dementia care research in future years, where people and families who live with the condition are not excluded from studies simply because of where they live. I hope that the people of Yorkshire and Humber will embrace this JDR initiative and experience the pleasure of their contribution to dementia care research.”
Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia.
