We’re proud to be co-creating and funding Access to Clinical Trials for Brain Tumours (ACT-BT).
Hosted by the University of Leeds, the initiative is being set up to break down the barriers that prevent people with brain tumours from taking part in research.
Consultants will be able to refer adults with primary brain tumours from anywhere in the UK to the panel. They will help match them to any clinical trials for which they may be eligible.
Barriers to participation
Clinical trials for brain tumours consistently have the lowest recruitment levels of all cancer types in the UK. Our 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. You can listen to a conversation with her about ACT-BT on our podcast here.
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.”
Professor Susan Short, ACT-BT lead
What is The Brain Tumour Charity funding?
We are funding ACT-BT’s set-up and running costs, including a coordinator post and the members’ time, for an initial 8-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, 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, 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.”
Owen Sutton, Young Ambassador
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 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.”
FAQs
Access to Clinical Trials for Brain Tumours (ACT-BT) aims to improve access to clinical trials for adults diagnosed with brain tumours – which currently have the lowest recruitment levels of all cancer types in the UK.
It will enable consultants to complete a simple online form to refer adults with primary brain tumours from anywhere in the UK to a panel of clinical trial experts.
The panel will meet regularly to review each case and give individualised, timely advice on clinical trials that patients may be eligible for.
The aim of this initiative is to significantly increase the number of adults diagnosed with a brain tumour who take part in clinical trials. We hope this will give individuals the best possible chance of living, longer better lives and help scientists develop kinder, better treatments for all brain tumour types.
ACT-BT is now in the set-up phase. Once this is complete, clinicians will be able to proceed with referrals to the panel. We hope this will be in late spring.
At present, there are a few websites individuals can visit to find out what clinical trials are available, but ACT-BT aims to speed up that process and make it more accessible with less emphasis on the patient doing hours of online research.
There is an existing initiative that focuses exclusively on precision medicine studies.
Please liaise with your clinician. They will need to complete a simple online form on your behalf.
As clinical trials typically have strict eligibility criteria, there may not be a suitable trial available for everyone. But the ACT-BT panel will check your case again and let your clinician know if any new trials become available that you may be eligible for.
There are, typically, strict criteria around eligibility in order to get the best results from that study. For example, factors like previous treatment, genetic profiling, age and contra-indications can impact eligibility. The expert panel will be familiar with these and can provide guidance.
The panel expect to have sufficient capacity to discuss the number of referrals they receive each week.
Advice will be fed back to the referrer within 24 hours of the panel taking place. The panel will recommend that they discuss this information with the patient within a week where possible.
Professor Susan Short from the University of Leeds, who put forward this initiative, is the ACT-BT lead. She runs a portfolio of clinical studies for people with brain tumours.
The panel will consist of 10 multi-disciplinary experts from across the UK. They will each be a lead researcher of a national study and will be able to provide accurate information about study status and recruitment criteria.
The Charity is funding ACT-BT’s set up and running costs for an initial eight-month pilot phase.
All person level data will be held within secure NHS IT infrastructure. All individuals using this data will undergo information governance and data security training. Users will also sign an agreement to adhere to strict guidelines on information use.