Cambridge researchers are actively seeking the input of people living with dementia and their families to help identify existing drugs that could be repurposed for clinical trials. A new online platform, aptly named POPPED – the POrtal for Patient and Public Engagement in Dementia Research – has been launched to facilitate this crucial collaboration.
Dr Ben Underwood, from the Department of Psychiatry at the University of Cambridge and Cambridgeshire and Peterborough NHS Foundation Trust, emphasised the importance of including lived experience in medical research. “People with experience of a condition are the experts, often more so than us,” he stated. “Dementia affects so many, almost everyone has a connection to it, and we want a broad range of perspectives on how best to tackle it.”
With fifty million people worldwide – including one million in the UK – currently living with dementia, the need for effective treatments is pressing. While existing therapies are limited, recent advances offer hope, including the first drugs now licensed in the UK that demonstrably slow the progression of the disease.
Researchers are now increasingly turning to the strategy of drug repurposing – identifying existing, approved medications that might be effective against dementia. This approach can significantly accelerate the process of clinical trials, as the safety profiles of these drugs are already well-established.
The POPPED platform was created by Dr Underwood and Linda Pointon, a programme manager with personal experience of the condition. Linda cared for her mother-in-law, who lived with frontotemporal dementia before passing away in 2020. “We’re launching this website to ensure as many voices as possible are heard,” explained Linda. “It’s a chance for those affected by dementia – directly or as carers – to guide our research and help us understand what aspects of potential treatments truly matter, both in terms of benefits and potential side effects.”
Information gathered through POPPED will directly inform the AD-SMART trial, led by Imperial College London. This trial will investigate several existing drugs – alongside a placebo – to rapidly determine if any can slow the progression of early Alzheimer’s disease.
Dr Underwood underscored the power of widespread engagement. “Instead of asking a limited few, this website allows us to reach thousands. The more people participate, the more impactful it will be. We’re inviting everyone to visit the site and share their thoughts – together, we can work to beat this devastating condition which I witness the effects of every day in my clinic.”
