A new nationwide online and telephone service that helps people to take part in dementia research studies has been launched across the country.
The Join Dementia Research service, a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland and funded by the Department of Health, promises to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time.
Join Dementia Research is designed to overcome barriers in accessing research and will 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 England, Scotland and Wales. After piloting the service in a small region for six months, more than 1,500 people have signed up and already over 200 of them have participated in studies through Join Dementia Research.
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 (tel:0300 111 5 111) and Alzheimer’s Society (tel: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.
Over 100 volunteers have signed up to Join Dementia Research in the North East and Cumbria region and 3 volunteers are already enrolled into a research study with many more being assessed for eligibility. 9 studies are open to recruitment in our region
Julie Rowbotham, research and development manager at South Tees Hospitals NHS Foundation Trust said: “This is a fantastic opportunity to raise awareness of dementia research and for patients and their carers to sign up and express an interest in research ensuring they can be actively approached when suitable trials are set up.”
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.