New national service to aid dementia research launched at UCLH 

24/02/2015 00:00 
A nationwide online and telephone service that helps people take part in dementia research studies was launched today at University College London Hospitals NHS Foundation Trust.

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 find the right participants at the right time.
This new initiative has been developed as part of the Prime Minister’s Challenge on Dementia and the launch follows Saturday’s announcement of £300m for dementia research with a direct call for the public to get involved.
UCLH consultant Prof Martin Rossor, who is also 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 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.”
One of the studies recruiting patients through Join Dementia Research is the YOAD (Young Onset Alzheimer’s Disease) study run by consultant neurologist Jonathan Schott. Nick Pollen is taking part in the study as a control subject, along with his wife who has Posterior Cortical Atrophy.
“The amount of time involved is not intrusive, but the benefit, in terms of social gain and person benefits, are enormous,” he said.
“I don’t think it impacts on the excellent quality of care we receive, but on receiving the diagnosis my wife and I were both keen to ensure we did everything we could, both for my wife living with PCA and for research, for those who come after us.”
Secretary of State for Health Jeremy Hunt said: “New research is desperately needed to help the growing numbers of people who live with dementia, which is why we’re doubling the size of the funding pot. This is an important initiative, and I encourage anyone who is interested to visit the website or call the charity helplines to find out more about how they can help us tackle dementia.”
The 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.

UCLH,  in partnership with UCL, is home to one of the leading NIHR biomedical research centres and one of the four NIHR Dementia biomedical research units.

To watch coverage of the launch on Channel 5, click here.

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