Leeds Cancer Research Centre launches new initiative for brain tumour patients
Access to Clinical Trials for Brain Tumours (ACT-BT), will mean more patients with a brain tumour diagnosis will have the chance to take part in clinical trials and access potential new treatments.
In partnership with The Brain Tumour Charity, the University of Leeds and the Leeds Cancer Research Centre (LCRC) will be hosting and co-creating this initiative which will open up trial opportunities in an area which has the lowest recruitment of all cancer types in the UK. Consultants will be able to refer adults with primary brain tumours from anywhere in the UK to the panel which will help match them to any clinical trials they may be eligible for.
Just 12% of brain tumour patients have taken part in a clinical trial.
Barriers to participation
Clinical trials for brain tumours consistently have the lowest recruitment levels of all cancer types in the UK. The Brain Tumour Charity Barriers to Participation in Research report found that just 12% of brain tumour patients have taken part in a clinical trial. The report identified key obstacles including limited awareness – less than half of those surveyed said they’d been told about potential research opportunities. Distance from specialist cancer centres also means trials are not being delivered evenly across the country. And there’s not enough support for patients’ cognitive and physical wellbeing to enable participation.
Improving access to brain tumour clinical trials
ACT-BT is now in the set-up phase. We hope it will open for referrals in late spring. To refer patients to the panel, consultants will need to fill in a simple online form. Then they’ll receive timely, individualised advice that they can discuss with the patient.
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.
Professor Susan Short, co-director of the Leeds Cancer Research Centre at the University of Leeds, is the ACT-BT lead. She runs a portfolio of clinical studies for people with brain tumours.
“Our aim is to remove the barriers that stop patients taking part in clinical research. By improving access to trials, we can accelerate discovery and ensure that new treatments reach those who need them sooner.
The Brain Tumour Charity are funding ACT-BT’s set-up and running costs, including a coordinator post and the members’ time, for an initial eight month pilot phase.
Dr Michele Afif, Chief Executive at the Brain Tumour Charity Said, “We’re incredibly proud that The Brain Tumour Charity is funding this vital new initiative. Brain tumours remain the biggest cancer killer of people under 40 years old. Progress has been frustratingly slow, not helped by the systemic barriers that mean just 12% of brain tumour patients have taken part in a clinical trial. By enabling more patients across the UK to access brain tumour clinical trials, we hope to help scientists develop kinder, more effective treatments. This is key to giving individuals the best possible chance of living longer, better lives.”
What this means to the brain tumour community
Liz Paul’s daughter, Natalie, from Warwick (pictured above) was diagnosed with an aggressive brain tumour in 2017. Treatment included multiple surgeries and gruelling radiotherapy and chemotherapy. Natalie’s family also raised money for her to access immunotherapy in Germany. Natalie died in November 2021 aged 31, just seven weeks after her wedding.
Liz, now one of our Involvement Champions, welcomed the launch of ACT-BT. She said: “Accessing clinical trials for Natalie was exceedingly difficult. Even just finding out what they are, despite your best efforts – you’re left trawling the internet for hours. You might find some trials, but then you have to work out if you are eligible. ACT-BT is a much-needed initiative for people with brain tumours. It will be a great resource for patients and their families, providing a more equitable route for accessing brain tumour clinical trials.”
Taking part in a brain tumour clinical trial
Owen Sutton BCAv, 26, from Tamworth in Staffordshire, was diagnosed with a low grade pilocytic astrocytoma when he was at university. He had to learn to walk and talk again after experiencing a stroke during surgery to remove the tumour.
Owen continued to experience symptoms such as fatigue and seizures which affected his quality of life until he joined a clinical trial at HCA London in 2021. His seizures stopped, and scans show that the cystic element of his tumour has been shrinking.
Owen is a Young Ambassador for The Brain Tumour Charity and a passionate advocate for greater investment in research. He said: “I am so grateful to be on a clinical trial that enables me to lead a close-to-normal life. The team monitors me closely, and with regular MRIs and check-ups, I feel incredibly safe, supported and hopeful.
Every person diagnosed with a brain tumour should have the opportunity to take part in a clinical trial that could improve their care and help them find hope like I have.”
Maximising participation
ACT-BT will work closely with the international trial matching platform, myTomorrows, and other related initiatives. This collaborative approach will help maximise participation and build the case for more trials and resources. The Brain Tumour Charity is also funding the Patient and Public Involvement and Engagement (PPIE) element of ACT-BT, which brainstrust is overseeing. They will invite up to 10 patients and caregivers to share their perspectives at each stage of the panel’s development.
Dr Helen Bulbeck, co-founder of brainstrust and a co-investigator of this project, said: “Patient voices must be at the heart of improving access to clinical trials. Through our work with ACT-BT, we’re ensuring that people affected by brain tumours can shape this initiative from the ground up. By involving patients and caregivers at every stage, we can create a system that truly understands and addresses their needs, making clinical trial participation not just possible, but meaningful and supportive.”
