People with dementia are at risk of missing out on new treatments if the UK does not improve how it hosts clinical trials, according to a new report from Alzheimer’s Research UK.
Urgent reform is needed if the UK is to play a leading role in developing new treatments and producing better outcomes for people with dementia.
The country risks losing ground to others in the search for new dementia treatments, especially in the crucial phase III trials that involve larger numbers of participants and are an essential element of developing new treatments for those with dementia.
The future of clinical trials
Clinical trials offer early access to potential treatments for people enrolled in them, as well as benefitting UK life sciences.
But our report reveals the challenges dementia clinical trials currently face in the UK. These include:
- Only a small number of people eligible to take part in dementia clinical trials actually do so – just 2% of those diagnosed with dementia are part of Join Dementia Research (JDR), the leading registry for dementia research in the UK.
- Lack of awareness among people diagnosed with dementia about opportunities to take part in clinical research.
- The risk of dementia researchers leaving the field due to lack of funding.
- A fragmented healthcare system leading to suboptimal links between clinical research and dementia diagnoses in the NHS, resulting in lack of awareness of opportunities to take part in research initiatives.
- A lengthy and bureaucratic process in the recruitment and approval of clinical trials. It can take about three years to recruit enough dementia patients to run an 18-month trial. The average cancer trial takes 2.3 years from study start up to completion of the trial.
- Failure to diagnose more people at an early stage – when they are more likely to be eligible to take part in clinical trials – due to limited access to and cost of diagnostics, such as PET scans and lumbar punctures to gather CSF samples. The UK currently only has 0.5 PET scanners per million people, about six times less than Germany per capita and a tenth of that of the US.
Our report outlines a series of recommendations to address these issues and transform the clinical trials landscape.
Increasing dementia research funding can enable more accurate and timely diagnoses, and integrating clinical research more closely with all parts of the NHS can improve participation in dementia clinical trials.
The success of the COVID-19 vaccine rollout across the UK shows that future treatments for conditions such as dementia can be developed and approved much faster, and a network of high performing Alzheimer’s disease clinical trial sites can reduce bureaucracy and speed up regulatory approval.