A mother has recounted the tragic tale of her daughter’s passing, which occurred a mere seven weeks post her wedding. Natalie was diagnosed with a brain tumor back in 2017 and underwent rigorous treatments like radiotherapy and chemotherapy.
Sadly, at the age of 31, Natalie succumbed to her illness in November 2021. Her grieving mother, Liz Paul, is now endorsing a new initiative aimed at matching patients with clinical trials to aid in their treatment.
Throughout Natalie’s battle, Liz witnessed her daughter undergo surgeries and even travel to Germany for treatments costing £56,000 per session. She expressed the immense difficulty they faced in finding medical trials that could have potentially helped Natalie.
Lauding the launch of Access to Clinical Trials for Brain Tumors (ACT-BT), a collaborative effort between The Brain Tumour Charity and the University of Leeds, Liz emphasized the necessity of such a system for brain tumor patients and their families.
ACT-BT is scheduled to be operational by late spring, allowing consultants to refer adults with primary brain tumors to the program through a simple online form. A multi-disciplinary panel of 10 experts from across the UK will evaluate the cases weekly to provide personalized advice.
Professor Susan Short, co-director of the Leeds Cancer Research Centre and lead of ACT-BT, aims to remove barriers hindering patient participation in clinical research. The Brain Tumour Charity is covering the costs of setting up and running ACT-BT for an initial eight-month pilot phase.
Dr. Michele Afif, Chief Executive at The Brain Tumour Charity, expressed pride in funding this vital initiative to improve access to brain tumor clinical trials and develop more effective treatments to enhance patients’ chances of longer, better lives.
Through collaboration with myTomorrows and other related initiatives, ACT-BT aims to maximize clinical trial participation and advocate for more resources and trials in the field. The initiative also includes Patient and Public Involvement and Engagement (PPIE) overseen by brainstrust to ensure patient voices shape the program.
Dr. Helen Bulbeck, co-founder of brainstrust, emphasized the importance of involving patients and caregivers in every stage of the initiative to create a system that truly understands and meets their needs, making clinical trial participation not just feasible but meaningful and supportive.