Bereaved Warwickshire mother backs new brain tumour initiative
Liz Paul has welcomed the launch of a UK-wide service linking adult patients to suitable clinical trials for brain tumours
A mother from Warwickshire who lost her 31-year-old daughter to a brain tumour in November 2021 has welcomed the launch of Access to Clinical Trials for Brain Tumours (ACT-BT).
Liz Paul’s daughter, Natalie, died just seven weeks after her wedding, following years of treatment including surgery, radiotherapy, chemotherapy, and privately funded immunotherapy.
Reflecting on her daughter’s experience, Liz 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, co-created and funded by The Brain Tumour Charity and hosted by the University of Leeds, is designed to make it easier for adult patients across the UK to access brain tumour clinical trials.
Liz said: “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.”
Clinical trials for brain tumours have the lowest recruitment rates of all cancer types in the UK.
Only 12% of patients have participated in a trial, with key barriers including lack of awareness, distance from specialist centres, and insufficient support for cognitive and physical wellbeing.
Professor Susan Short, co-director of the Leeds Cancer Research Centre and lead of ACT-BT, said: “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.”
Dr Michele Afif, Chief Executive of The Brain Tumour Charity, added: “Brain tumours remain the biggest cancer killer of people under 40. 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.”
ACT-BT will operate as a weekly panel of ten experts who will review referred cases and provide tailored advice. The initiative will also involve patients and caregivers in its development through the Patient and Public Involvement and Engagement (PPIE) programme, ensuring their voices guide the process.
Dr Helen Bulbeck, co-founder of brainstrust, 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.”
ACT-BT is expected to be operational by late spring, offering consultants a simple online referral route to the expert panel. It will also work closely with international trial matching platforms to maximise patient access and build the case for more trials and resources.