A BEREAVED Coventry mum who lost her 31-year-old daughter to a brain tumour just weeks after her wedding has backed a ‘much-needed’ initiative for people with the disease.
Liz Paul has welcomed the launch of Access to Clinical Trials for Brain Tumours (ACT-BT), an initiative which enables consultants to refer adult patients from anywhere in the UK to a panel of clinical trial experts who will review their case and match them to any clinical trials for which they may be eligible.
Experts hope the initiative will enable more UK patients to access brain tumour clinical trials, while exposing the barriers that still exist and collecting data to strengthen the case for more trials and resources.
Liz’s daughter Natalie, a food development technologist from Warwick, was diagnosed with an aggressive brain tumour in 2017. She blogged during her illness to help raise awareness of brain tumours, and vowed throughout not to let cancer define her.
Treatment included multiple surgeries and gruelling radiotherapy and chemotherapy. Natalie’s family also raised money for her to access immunotherapy in Germany – at a cost, excluding travel, of £56,000 per round.
Natalie died in November 2021 aged 31, just seven weeks after her wedding.
Liz, now an Involvement Champion with The Brain Tumour Charity, welcomed the launch of ACT-BT, highlighting the need for more accessible information about brain tumour clinical trials.
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.”
ACT-BT – co-created and funded by The Brain Tumour Charity, and hosted by the University of Leeds – is expected to be operational by late spring. Consultants will then be able to refer adults with primary brain tumours to the panel by completing an online form, and receive timely, individualised advice that they can discuss with the patient.
ACT-BT lead, Professor Susan Short, co-director of the Leeds Cancer Research Centre at the University of Leeds, runs a portfolio of clinical studies for people with brain tumours.
She 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.”
The Brain Tumour Charity is 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: “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 per cent 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.”
