A mother has recounted the tragic loss of her daughter, who passed away just seven weeks after getting married. Natalie was diagnosed with a brain tumor in 2017 and underwent rigorous treatments, including radiotherapy and chemotherapy.
Sadly, at the age of 31, Natalie succumbed to the illness in November 2021. Her mother, Liz Paul, who hails from Warwickshire, has now become an advocate for a new program created to match patients with clinical trials.
Liz witnessed her daughter endure surgeries and even seek treatment in Germany, costing £56,000 per session. She expressed the challenges of finding appropriate medical trials that could have potentially helped her daughter.
The initiative Liz is supporting is called Access to Clinical Trials for Brain Tumors (ACT-BT), a project developed in partnership with The Brain Tumor Charity and hosted by the University of Leeds.
According to Liz, accessing clinical trials for Natalie was extremely arduous, involving hours of online searches to identify potential trials and determine eligibility. Liz believes that ACT-BT will be a valuable resource for patients and families, offering a more accessible path to brain tumor clinical trials.
ACT-BT is scheduled to launch by late spring, providing a streamlined online referral process for consultants to recommend adult patients with primary brain tumors. The cases will undergo evaluation by a panel of ten experts from various UK locations on a weekly basis.
Professor Susan Short, co-director of the Leeds Cancer Research Centre and lead of ACT-BT, emphasized the goal of removing barriers hindering patient participation in clinical research. The Brain Tumor Charity is funding the initiative to ensure broader access to brain tumor clinical trials across the UK.
By facilitating access to clinical trials, the initiative aims to expedite the discovery of new treatments for brain tumors and improve patient outcomes. Collaboration with myTomorrows and other relevant platforms will enhance trial participation and advocate for more resources in this field.
Additionally, the project incorporates Patient and Public Involvement and Engagement (PPIE) aspects, overseen by brainstrust, allowing patients and caregivers to contribute their perspectives throughout the initiative’s development. Dr. Helen Bulbeck, co-founder of brainstrust, emphasized the importance of incorporating patient voices to enhance access to clinical trials and create a supportive system that addresses their needs effectively.