Brain tumours are the biggest cancer killer of children and adults under 40. Yet progress in treatment and survival rates remain frustratingly slow. Research, including clinical trials, is key to addressing these challenges. It provides better understanding of the disease, drives discovery of new treatments, improves diagnosis, and enhances overall quality of care – helping people live longer, better lives.
The barriers between research and patient engagement
Research relies on the active participation of patients, whether through clinical trials, or through donating their biological material. Despite this clear need, many individuals diagnosed with a brain tumour face significant barriers preventing them from engaging with research.
The Brain Tumour Charity’s survey of 1335 UK brain tumour patients and families about their experience of NHS care, found that less than half (42%) had been told about potential research opportunities, and only 12% participated in clinical trials.
This isn’t down to patient apathy. While fewer clinical trials exist in this disease area, there are systemic barriers. These include staffing shortages and set-up challenges which lead to significant geographic disparities in trial availability.
Physical symptoms commonly associated with a brain tumour include fatigue, cognitive function, visual or hearing impairment, and mobility difficulties. These in themselves present significant obstacles when participation in brain tumour studies involves, for instance, understanding complex, lengthy documents.
Taking steps to remove these barriers (by, for example, ensuring every patient can contact a Clinical Nurse Specialist, to help them interpret documents) is crucial to ensuring that research into brain tumours is as inclusive, accessible, and effective as possible.
Too many patients must become their own medical experts – trawling the internet for information and navigating the plethora of trial finders – many of which are confusing to use and contain outdated information. There needs to be a better way to match patients to trials so progress can be made, and to improve equity of access to trials.
Ultimately, we want to see political action to help with a coordinated response to this. We also recognise that The Charity has a role here in supporting national initiatives that will help bring about positive change.
Access to Clinical Trials for Brain Tumours (ACT-BT)
To address this problem head on, The Brain Tumour Charity is proud to be funding and working with Professor Susan Short to co-develop Access to Clinical Trials for Brain Tumours (ACT-BT), an innovative UK wide initiative to ensure all patients, via their medical teams, are matched to any suitable available trial.
Hosted by the University of Leeds, the initiative aims to break down the barriers that prevent people with brain tumours from taking part in research.
By completing a simple online form, consultants will be able to refer adults with primary brain tumours from anywhere in the UK to a virtual panel of the UK’s top clinical trialists who will match them to any clinical trials for which they may be eligible.
The panel will consist of 10 experts from across the UK who meet weekly. Each panel member will be a lead researcher of a national study. This means that they will be able to provide accurate information about study status and recruitment criteria – something we know is a challenge when relying on websites, where information can be out of date quickly.
In this way, we hope ACT-BT will help accelerate research, by enabling the active participation of patients.
The slow pace of improvements in treatment options is not due to a lack of patient willingness to engage with research, but rather the overwhelming number of systemic barriers that have aligned to limit participation at every turn. This type of initiative helps to break them down.
In addition, ACT-BT will generate real-world real-time data on trial availability, recruitment rates, and the number of patients eligible for trials. This data will identify and quantify additional roadblocks to trial participation and inform future initiatives.
ACT-BT is now in the set-up phase, and we hope it will be open for referrals in late spring 2026.
Of course, there are other challenges, including the time and effort it takes to set up trials and the bureaucracy involved in doing so. Also, the urgent need for more late-stage translational drug development funding to provide more and better potential treatments to test in trials – and this leading to trials. Then there are the cultural and workforce issues in the NHS which does not sufficiently embed research in clinical practice.
However, we believe ACT-BT presents a real opportunity to move the dial on recruitment for trials. We hope it will be the start of something transformational and will ultimately plug into other nationwide initiatives that mean, eventually, every patient who wants to can participate in a clinical trial.
You can read the magazine article – and other features about health and policy initiatives – here