Dementia patients and carers asked for views on drug research by University of Cambridge
Cambridge researchers are asking people with lived experience of dementia – patients and their friends and families – which existing drugs should be repurposed for clinical trials.
The POPPED website - POrtal for Patient and Public Engagement in Dementia Research - has been launched to enable anyone to give their feedback on dementia research projects.
Dr Ben Underwood, from the Department of Psychiatry at the University of Cambridge and Cambridgeshire and Peterborough NHS Foundation Trust, 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.”
Fifty million people worldwide are affected by dementia, including one million people in the UK. While current treatments are limited, research has led to recent advances, with the first drugs that slow down dementia now licensed in the UK,
Meanwhile, potential dementia blood tests are being trialled and scientists are turning to existing drugs to see if they can be repurposed to treat the disease. This can speed up the route to clinical trials as the safety profile of existing drugs is already known.
Dr Underwood teamed up with Linda Pointon, a programme manager at the Department of Psychiatry, to create the new website.
Linda has experience of caring for her mother-in-law, who had frontotemporal dementia and died in 2020.
She 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 team will 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 whose effects I see in my clinic every day.”
