Natalie, a 31-year-old bride from Warwickshire, tragically passed away just seven weeks after her wedding, following a long battle with a brain tumour. Diagnosed in 2017, she endured intensive treatments including radiotherapy, chemotherapy, multiple surgeries, and even travelled to Germany for costly treatment rounds, each amounting to £56,000.
Her mother, Liz Paul, recalls the hardship of searching for clinical trials that might have offered hope. “Accessing clinical trials for Natalie was exceedingly difficult. Finding them was a challenge despite persistent efforts, leaving us endlessly searching the internet. Even when you find trials, determining eligibility is another hurdle,” Liz shared.
To address challenges like these, a new system called Access to Clinical Trials for Brain Tumours (ACT-BT) has been launched. Co-created and funded by The Brain Tumour Charity and hosted by the University of Leeds, ACT-BT aims to streamline access to clinical trials for brain tumour patients across the UK.
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Set to be operational by late spring, ACT-BT allows consultants to refer adult patients with primary brain tumours to a specialist panel via a simple online form. A multidisciplinary panel of ten leading national experts reviews each case weekly, providing timely and personalized advice based on up-to-date information about study availability and recruitment criteria.
Professor Susan Short, ACT-BT lead and co-director of the Leeds Cancer Research Centre, emphasized the importance of the initiative: “Our goal is to remove barriers preventing patients from participating in clinical research. By improving trial access, we can speed up discoveries and bring new treatments to those who need them sooner.”
The Brain Tumour Charity is financing ACT-BT’s initial eight-month pilot phase, covering setup, coordination, and expert time. Dr Michele Afif, Chief Executive at the charity, explained, “Brain tumours are the leading cause of cancer death in people under 40. Progress has been slow, with only 12% of brain tumour patients involved in clinical trials due to systemic barriers. Helping more patients access trials is crucial to developing kinder, more effective treatments and giving patients a better chance at longer, healthier lives.”
ACT-BT will collaborate closely with international trial matching platforms like myTomorrows to maximize participation and advocate for increased trials and resources. Additionally, the charity supports the Patient and Public Involvement and Engagement (PPIE) aspect through brainstrust, which involves patients and caregivers directly in the initiative’s development.
Dr Helen Bulbeck, brainstrust co-founder and project co-investigator, highlights the importance of patient involvement: “Patient voices must be central to improving trial access. By including those affected by brain tumours at every stage, we are creating a system that truly understands their needs, making clinical trial participation more accessible, meaningful, and supportive.”
Natalie’s story is a powerful reminder of the urgent need for improved clinical trial pathways. Through ACT-BT, future patients navigating brain tumour treatment may find clearer routes to promising clinical trials, potentially transforming lives.