Help to set the direction of dementia research
Researchers at CPFT and the University of Cambridge are seeking the views of people with lived experience of dementia – patients and their friends and families – on which existing drugs should be tested in clinical trials to see whether they can stop dementia progressing.
Today sees the launch of the POrtal for Patient and Public Engagement in Dementia Research (POPPED) website, where anyone can give their feedback on dementia research projects.
Dementia affects 50 million people worldwide and 1 million people in the UK. Current treatments are limited, but research with CPFT has led to some significant recent advances. For example, the first drugs which slow down the disease are now licensed in the UK and potential dementia blood tests are being trialled.
Scientists are also turning to existing drugs to see if they could be repurposed to treat dementia. As the safety profile of these drugs is already known, clinical trials to test them further can be set up quickly. Researchers want to ask members of the public which drugs they would like to see prioritised for these clinical trials.
CPFT's Research and Development Director Dr Ben Underwood (pictured) said: “One thing that always improves research into medical conditions is the involvement of people with experience of them – in many respects, you are the experts, rather than us.
“As dementia is common, almost everyone has some experience of it, either through family, friends, work or meeting people with dementia in general life. It’s a problem across society and we want a wide range of opinions for the best way to tackle it.”
Dr Underwood has teamed up with Linda Pointon, a programme manager at the University of Cambridge Department of Psychiatry, to create a website where everyone can give their feedback on dementia research projects. Linda herself has experience of caring for her mother-in-law, who had frontotemporal dementia and passed away in 2020.
Linda said: “We’re launching our website because we want as many people as possible to share their views and help us guide the direction of our research. It’s a great opportunity for all of us who have been affected by dementia, either directly or caring for a friend or relative, to help researchers understand what aspects of these potential treatments are important and meaningful, both in terms of benefits and side-effects.”
The information collected by the POPPED team will be used to help inform AD-SMART, a trial to be led by Imperial College London, which will test several existing drugs alongside a placebo to quickly determine if any can slow early Alzheimer’s progression.
Dr Underwood added: “Instead of asking a few people what might be helpful, our website gives us the opportunity to ask thousands of people. The more people who use it, the more powerful it will be, so I’d encourage everyone to visit the site and tell us what they think. We can use it to work together to beat dementia, a condition with devastating effects I see in my clinic every day.”
Visit the POPPED website to give your views and share this link with family and friends: https://popped.org.uk/
