Professor Susan Short has today announced that ACT-BT has officially opened, in a talk at the British Neuro-Oncology Society conference.
Healthcare professionals can now refer people diagnosed with a brain tumour to its panel of experts to receive timely, personalised advice on clinical trials they may be eligible for. It’s for people over the age of 16 with any type of primary brain tumour, from anywhere in the UK.
We are co-creating and funding the new initiative, which is hosted by the University of Leeds.
With support from brainstrust – the brain cancer people, a group of people with lived experience of brain tumours have helped to shape ACT-BT. They will now continue to guide its development.
“Too often, the burden of searching for suitable clinical trials falls on people coming to terms with a new diagnosis or healthcare professionals working in already under-resourced environments. With ACT-BT now open for referrals, we have a straightforward new way for people diagnosed with brain tumours to get timely, personalised advice on clinical trial participation. Our aim is to ensure that everyone who may be suitable for a study is offered the chance to take part.”
Professor Susan Short, ACT-BT lead
Here are five ways ACT-BT aims to make a difference:
1. Enable more people to access brain tumour clinical trials
The brain tumour community urgently needs access to kinder, better treatments.
The only way to achieve this is through research and clinical trials. Yet brain tumour clinical trials have the lowest recruitment levels of all cancers. Our Barriers to Participation in Research report found that just 12% of people diagnosed with a brain tumour have taken part in a clinical trial.
ACT-BT aims to change this by removing some of the major obstacles that stop people with brain tumours taking part in research.
2. Bear the burden of finding clinical trials
Many people diagnosed with a brain tumour are not told about potential research opportunities.
Unfortunately, this often means they and their loved ones feel they have little choice but to search for information themselves. But without specialist knowledge, it can be difficult to know where to start and whether you’ve identified every available option – and that it’s safe. It can also take a significant amount of time. Read Annie’s story
That’s exactly why ACT-BT was set up – to take the burden of finding research opportunities away from people who are coming to terms with a brain tumour diagnosis. The initiative aims to make the process much more straightforward, providing a central place to get timely, personalised advice.
3. Build the case for more brain tumour clinical trials
Clinical trials typically have strict eligibility criteria. This means there may not be a suitable trial available for everybody referred to the ACT-BT panel.
This is still important information for us to collect. If we can show that there are subsets of the brain tumour community who have no relevant research opportunities available to them, it will help us strengthen the case for more trials and resources.
4. Support healthcare professionals
It’s difficult for healthcare professionals to stay up to date with which brain tumour clinical trials are recruiting and what their eligibility criteria are. This is particularly true of any trials that are taking place outside of their hospital or local region, especially as online information sources can quickly become outdated.
Through ACT-BT, they will be able to get timely advice from a panel of clinical trial experts to discuss with their patients.
5. Ultimately, help scientists develop more effective treatments
In England, just 12.9% of adults diagnosed with brain cancer survive five years or more. Yet progress has been frustratingly slow.
ACT-BT will help us pick up the pace of progress by making it easier for people to take part in clinical trials. It is a vital step towards kinder, better treatments for all types of primary brain tumours.
Our CEO, Dr Michele Afif, said:
We are exceptionally proud to be funding ACT-BT and working closely with brainstrust and the University of Leeds on its development. Our aim is to remove some of the barriers that mean just 12% of people diagnosed with brain tumours have taken part in a clinical trial. The brain tumour community urgently needs more clinical trials, and better, equitable access to them, so progress can be made. ACT-BT will be the catalyst to help drive this change.”
Dr Michele Afif, Chief Executive at The Brain Tumour Charity