In a heartbreaking story, a mother from Warwickshire has shared the tragic loss of her 31-year-old daughter, Natalie, just seven weeks after her wedding. Natalie had been battling a brain tumour since 2017, undergoing intensive treatments including radiotherapy and chemotherapy. Tragically, she passed away in November 2021.
Liz Paul, Natalie’s grief-stricken mother, is now supporting the launch of a new initiative called Access to Clinical Trials for Brain Tumours (ACT-BT). This project, co-created and funded by The Brain Tumour Charity and hosted by the University of Leeds, aims to improve access to clinical trials for patients with brain tumours.
Liz recounts the immense challenge she faced in finding suitable medical trials that could have potentially aided her daughter. “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.”
The new ACT-BT system will allow consultants to refer adult patients with primary brain tumours to a panel of 10 expert researchers from across the UK. This panel will provide timely, individualised advice that patients can discuss with their medical team.
Professor Susan Short, co-director of the Leeds Cancer Research Centre and the lead for ACT-BT, emphasised the importance of removing the barriers that prevent patients from participating in clinical research. “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 is covering the costs of setting up and operating ACT-BT for an initial eight-month pilot phase. Dr Michele Afif, Chief Executive at the charity, expressed their commitment to this vital new initiative. “Brain tumours remain the biggest cancer killer of people under 40. By enabling more patients across the UK to access brain tumour clinical trials, we hope to help scientists develop kinder, more effective treatments.”
Through the involvement of patient and caregiver representatives, ACT-BT aims to create a system that truly understands and addresses the needs of those affected by brain tumours, making clinical trial participation not just possible, but meaningful and supportive.
Liz Paul’s heartbreaking experience has driven her to advocate for this important initiative, which she hopes will make a difference for other families facing the challenges of brain tumour diagnosis and treatment.