A mother recently recounted the tragic loss of her daughter, who passed away just seven weeks after getting married. Natalie was diagnosed with a brain tumor back in 2017 and underwent rigorous treatments, including radiotherapy and chemotherapy.
Sadly, the 31-year-old Natalie lost her battle in November 2021. Her mother, Liz Paul, is now advocating for a new system that aims to connect patients with suitable clinical trials.
Liz, who hails from Warwickshire, witnessed her daughter endure surgeries and even seek treatment in Germany, costing £56,000 per round. She emphasized the immense difficulty in finding medical trials that could have potentially benefited her daughter.
The launch of Access to Clinical Trials for Brain Tumors (ACT-BT), a collaborative project funded by The Brain Tumor Charity and hosted by the University of Leeds, has received commendation from Liz.
Expressing her thoughts, Liz mentioned, “Accessing clinical trials for Natalie was exceedingly challenging. Despite extensive efforts, simply discovering these trials involved hours of online searching. ACT-BT will serve as a vital resource for individuals with brain tumors and their families, offering a more accessible path to clinical trials.”
ACT-BT is slated to be operational by late spring, allowing consultants to refer adults with primary brain tumors to the panel through a straightforward online process. The cases will be reviewed by a panel of 10 experts from across the UK on a weekly basis, with each member being a lead researcher of a national study.
Professor Susan Short, co-director of the Leeds Cancer Research Centre at the University of Leeds and the lead for ACT-BT, aims to eliminate barriers hindering patient participation in clinical research. The Brain Tumor Charity is funding the setup and operation of ACT-BT, including a pilot phase.
Dr. Michele Afif, Chief Executive at The Brain Tumor Charity, highlighted the importance of enabling more patients to access brain tumor clinical trials, emphasizing the potential for developing more effective treatments.
The collaborative effort with myTomorrows and other related initiatives in the field will maximize clinical trial participation and advocate for more resources. The Charity is also supporting the Patient and Public Involvement and Engagement (PPIE) aspect of ACT-BT, ensuring patient voices are central to improving trial access.
Brainstrust will oversee the PPIE, involving up to 10 patients and caregivers at each stage to provide their perspectives. Dr. Helen Bulbeck, co-founder of brainstrust, emphasized the significance of involving patients and caregivers in shaping the initiative to ensure meaningful and supportive clinical trial participation.