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Join Dementia Research

This nationwide online & telephone service helps people take part in research studies. It will accelerate the pace of dementia research by connecting people with & without dementia with researchers.

Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by registering online at www.joindementiaresearch.nihr.ac.uk or by contacting the helplines of Alzheimer Scotland (0808 808 3000 – free to call, open 24 hours a day, 365 days a year) or Alzheimer’s Research UK (0300 111 5 111). 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.

See the Youtube video here https://www.youtube.com/watch?v=8V0EGL3ynkg for more information.

Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn, said: “The Scottish Government is delighted to support the Join Dementia Research initiative, which will help recruit more volunteers into research. “Through The Chief Scientist Office, we continue to provide funding of £475,000 per year for the Scottish Dementia Clinical Research Network. This complements our wider national work to further improve dementia diagnosis rates and improve care in all settings. As part of this, we are supporting the delivery of our world-leading post-diagnostic support guarantee for everyone newly diagnosed with the illness.”

Professor Peter Connelly, Director of the SDCRN, said: “Join Dementia Research (JDR) is an exciting opportunity to provide lay people and researchers in Scotland better access to high-quality studies across the full range of dementia research; from possible prevention through to improvements in how the treatment of more advanced stages of illness can be cared for. It bridges an important gap between SHARE (with its wide population appeal) and the very detailed Scottish Dementia Research Interest Register, both of which have been well-supported by the Scottish Government. We welcome its introduction and we should grasp the opportunity for involvement with both hands.”

Professor John Starr, Director of the SDCRN, said: “Although many of us care for people with dementia, formally or informally, day-to-day, we know that the only way to make a difference in the long term is through research. Join Dementia Research is a way that anyone can help to make this difference and I am delighted that people in Scotland will be able to participate in this important initiative."

Professor 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. 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.”

Sue Boex, one of the carers who helped design Join Dementia Research, 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.”

Henry Simmons, Chief Executive of Alzheimer Scotland, said: “As Scotland’s leading dementia charity, we are delighted to be involved in Join Dementia Research. Dementia is Scotland’s most pressing public health issue. “It has never been more important for us to encourage and support members of the public to participate in dementia research. It is only through research that we will better understand this illness, improve and extend the range of treatments available, provide the best possible care and hopefully find a cure. Join Dementia Research will make volunteering for research much easier for the public and allow many more people to become involved in this vital work.”

Speaking about this new service, Hilary Evans, Director of External Affairs at Alzheimer's Research UK, said: "As a charity focused on dementia research, we're acutely aware of the tremendous impact volunteers make on research progress in dementia. We know there is a strong appetite from the public to play a role in dementia research, but until now there hasn’t been an easy and coordinated way for people to register their interest. We're proud to be supporting Join Dementia Research to give people with dementia and their families the opportunity to be part of pioneering research to improve the lives of everyone affected by this heart-breaking condition."

© 2010, Scottish Dementia Clinical Research Network Hydrant