Ground-breaking new service empowers public in Northamptonshire to take part in vital dementia research A new nationwide online and telephone service that helps people to take part in dementia research studies launches across Northamptonshire today (24 Feb 2015). Join Dementia Research promises to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers to find the right participants at the right time. Join Dementia Research is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland and has been funded by the Department of Health.
Dementia affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected. A new national poll has shown that almost two thirds of the general public (62%) would be willing to take part in dementia research, but more than four out of five people (81%) wouldn’t know how to volunteer. Join Dementia Research is designed to overcome these barriers and give everyone the opportunity to play a role in changing the outlook for people with dementia now and in the future.
The lack of access to willing volunteers is holding back critical research into the condition with government figures showing that less than 5% of people with dementia take part in research studies. The first of its kind in the UK, this innovative new service will boost research participation by connecting people interested in research to suitable dementia studies across the East Midlands. Within Northamptonshire there are currently three NHS organisations looking into different aspects of dementia. The joindementiaresearch.nihr.ac.uk website offers a secure and easy way for someone to register their interest, discover studies that interest them, and ultimately connect with researchers to take part in their studies.
Anyone 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). By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.
Prof Tom Denning, Speciality Lead for Dementia, Clinical Research Network: East Midlands 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. People can register with Join Dementia Research without being obliged to take part in a particular study, but we hope that the service will expand the pool of willing participants. Growing the number of willing research volunteers will help push forward research to make advances in treatment, prevention and care.”
Jenny Coles from Kettering is a Join Dementia Research Champion, having cared for her mother when she was diagnosed with Vascular Dementia at age x. Jenny was a social worker with older people for 40 years. Jenny said: “This is a very exciting initiative, and one we really need people to get behind. Everyone can sign up, whether you have dementia or not, and there are lots of different types of studies to take part in. But because studies have very specific criteria, we need lots of people signing up in order to find the right people for the right study at the right time. I hope that 100,000 people will join the service in the first year. Its an ambitious target, but dementia is a massive problem and we’re ambitious to help make a difference through research.”
Prof Azhar Farooqi, Clinical Lead for Primary Care, Clinical Research Network: East Midlands, said: “As a practicing GP I am acutely aware of the devastating impact that dementia can have on the lives of our patients and their families, particularly for those who have been newly diagnosed as being at the early stage of the disease. Registering with Join Dementia Research could empower patients, helping them to play their part in the crucial search for better care today and a cure for the future.”
Current research studies within the East Midlands range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia.
initiative as an excellent opportunity for individuals to volunteer and contribute to vital research and are delighted to support it.”
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