Natalie was diagnosed with an aggressive brain tumour in 2017
Natalie tragically died just weeks after her wedding(Image: )
A Coventry mother, who tragically lost her 31 year old daughter to a brain tumour in November 2021 – just seven weeks post her wedding – has expressed support for the newly launched Access to Clinical Trials for Brain Tumours (ACT-BT).
The ACT-BT initiative is a joint effort by The Brain Tumour Charity and the University of Leeds. It allows consultants from across the UK to refer adult patients to a panel of clinical trial experts.
These experts will review each case and assist in matching them to any suitable clinical trials.
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The hope is that this initiative will enable more UK patients to access brain tumour clinical trials, while also identifying existing barriers and gathering data to bolster the argument for additional trials and resources.
Clinical trials for brain tumours consistently have the lowest recruitment levels of all cancer types in the UK. A recent report by The Brain Tumour Charity on Barriers to Participation in Research revealed that only 12% of brain tumour patients have participated in a clinical trial.
The report identified key hurdles such as limited awareness – less than half of those surveyed said they’d been informed about potential research opportunities.
Geographical distance from specialist cancer centres also means trials are not being delivered evenly across the country. Additionally, there’s inadequate support for patients’ cognitive and physical wellbeing to enable participation.
Natalie, daughter of Liz Paul and a food development technologist from Warwick, received a diagnosis of an aggressive brain tumour in 2017. Throughout her illness, she maintained a blog to raise awareness about brain tumours, determined not to let the disease define who she was.
Natalie, pictured with mum Liz, died just weeks after her wedding(Image: )
Her treatment involved numerous operations alongside demanding radiotherapy and chemotherapy sessions. The family also fundraised to enable Natalie to receive immunotherapy treatment in Germany – costing £56,000 per round, excluding travel expenses.
Tragically, Natalie passed away in November 2021 at the age of 31, merely seven weeks following her wedding day.
Liz, who now serves as an Involvement Champion with The Brain Tumour Charity, has expressed support for the ACT-BT launch, emphasising the importance of better access to information regarding brain tumour clinical trials.
Liz explained: “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.”
The ACT-BT programme is anticipated to become fully operational by late spring. Medical consultants will then have the ability to refer adult patients with primary brain tumours to the panel through a straightforward online form.
This will ensure they receive prompt, personalised guidance which can be discussed with patients. Cases will be reviewed by a multi-disciplinary panel of 10 experts from across the UK who meet weekly.
Each panel member will be a lead researcher of a national study and will be able to provide accurate information about study status and recruitment criteria.
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.
Professor Short stated: “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, commented: “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. 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.”
ACT-BT will collaborate closely with the international trial matching platform, myTomorrows, and other similar initiatives. This joint effort aims to boost clinical trial participation and advocate for more trials and resources.
The charity is also financing the Patient and Public Involvement and Engagement (PPIE) aspect of ACT-BT. Brainstrust will oversee this, inviting up to 10 patients and caregivers to contribute their insights at each stage of the panel’s development.
Dr Helen Bulbeck, co-founder of brainstrust and a co-investigator of this project, stated: “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.”
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