The mother of a Warwickshire woman who died just seven weeks after her wedding has spoken out to support a new national system designed to match patients with clinical trials for brain tumours.
A Devastating Loss After a Brief Marriage
Natalie, aged 31, passed away in November 2021 after a long battle with a brain tumour first diagnosed in 2017. Her mother, Liz Paul, watched her daughter endure gruelling treatments, including radiotherapy, chemotherapy, and surgeries. The family even travelled to Germany for specialist treatment costing £56,000 per round in their search for hope.
Liz described the immense difficulty of finding suitable medical trials that could have offered Natalie new treatment options. "Accessing clinical trials for Natalie was exceedingly difficult," she said. "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."
A New Hope: The ACT-BT Initiative
Liz has now praised the launch of Access to Clinical Trials for Brain Tumours (ACT-BT), a system co-created and funded by The Brain Tumour Charity and hosted by the University of Leeds. Expected to be operational by late spring, ACT-BT aims to remove barriers for patients.
Consultants will be able to refer adults with primary brain tumours to a weekly UK-wide expert panel via a simple online form. This panel of 10 leading researchers will provide timely, individualised advice on trial availability and eligibility.
"ACT-BT is a much-needed initiative for people with brain tumours," Liz stated. "It will be a great resource for patients and their families, providing a more equitable route for accessing brain tumour clinical trials."
Accelerating Progress Against a Deadly Disease
Brain tumours remain the biggest cancer killer of people under 40 in the UK, yet only around 12% of patients take part in clinical trials. The Brain Tumour Charity is funding ACT-BT's set-up and an initial eight-month pilot phase to change this.
Professor Susan Short, the ACT-BT lead from the University of Leeds, 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, emphasised the project's importance: "Progress has been frustratingly slow, not helped by systemic barriers... By enabling more patients across the UK to access brain tumour clinical trials, we hope to help scientists develop kinder, more effective treatments."
The initiative will collaborate with international platforms and includes a strong patient voice, overseen by the charity brainstrust, ensuring the system is shaped by those directly affected.
