A new service for people with dementia and carers to sign-up to participate in research will be available from the autumn.
Dementia patients and their carers will soon be able to register their interest in research in one simple step. The new web-based service allows further participation in research and could lead to new types of care and treatments to combat the disease.
Many patients and their loved ones want to help fight this terrible disease by volunteering for clinical trials or other research, but don’t have the opportunity. This will make it possible to do that.
Friday 21st marked World Alzheimer’s Day and with more than 670,000 people living with dementia in England and this number expecting to double by 2051, dementia is the biggest challenge we face today1. Much less is known about the causes and treatment of dementia than diseases such as cancer and heart disease. Doing more research is vital to improving the diagnosis, treatment and care of people with dementia and possibly preventing and eventually curing it.
Last year around 15,000 people participated in clinical research into dementia, which equates to just over 4% of the diagnosed population. The ambition is for 10% to take part in clinical research.That means increasing the number of people joining a study each day from 58 to 135.
Patients and carers are keen to participate in research and this new service will make it easier for them to do so. Launched in partnership between the Alzheimer’s Society, NIHR DeNDRoN, and the NHS, the new service will allow patients and carers to register an interest in research and be matched to studies that may suit them. It will increase opportunities for people to find the right study and help researchers to answer more research questions more quickly.
Carer, Leslie Simpson explains “My wife and I wanted to contribute to the understanding of dementia in the hope that we might benefit from some of the outcomes. Through DeNDRoN my wife has participated in questionnaires and I’ve been able to contribute to and feedback on research projects in my local area. I’ve also had the opportunity to attend groups and share my opinion on topics I feel are relevant. I can see that through having a national register I would be able to find out about everything happening across the country, not just studies and projects close to me in Newcastle”.
Professor Martin Rossor said “This is an exciting time. With your support and participation in studies together we can improve the quality of treatment and care for people with dementia. Participating in research can help change the future of dementia.”
To learn more about these plans and sign up to receive an email alert when we launch the register at www.dendron.nihr.ac.uk/register. Become one of 135 people joining a dementia research study every day.
1 Dementia 2012: A National Challenge, Alzheimer’s Society Report
Patients can already find information about current research on the NIHR Portfolio Database or ask their doctor about local opportunities to join a study.
