Our Research Engagement Manager, Becky Birch, outlines developments highlighted by Tessa Jowell’s debate
Last year, former cabinet Minister Tessa Jowell was diagnosed with a glioblastoma, an aggressive, high-grade brain tumour. This week she has spoken out about her diagnosis, the urgent need for increasing patient involvement in clinical trials and the importance of flexible trial design.
Glioblastomas are the most common primary brain tumour in adults. They are also the most aggressive form of adult brain tumour, meaning they are fast growing and likely to spread. The exact cause of this type of brain tumour is still unknown and treatment options are limited, therefore prognosis and quality of life for these patients is poor.
The current standard of care for patients diagnosed with glioblastoma is surgery to remove as much of the tumour as possible, followed by chemotherapy and radiation.
The Pink Drink
One of the most significant developments in this field in recent years has been the introduction of fluorescence-guided surgery. This involves giving patients a drug before surgery called 5-Aminolevulinic Acid (5-ALA), which makes brain tumour cells illuminate under fluorescent light.
This allows surgeons to see the tumour tissue more clearly so they can remove more of it. However, 5-ALA is currently only available in around half of neurosurgery units in the UK, and in her speech on Thursday at the House of Lords, Baroness Jowell called for access to this drug to be extended to all.
This is something we have been campaigning for, and in our research strategy, A Cure Can’t Wait, we outline how we will work to ensure every patient with a brain tumour has access to the best treatments and care available.
Baroness Jowell also spoke about the need to speed up the use of adaptive clinical trials and to give more patients the option to contribute to research and clinical trials.
While traditional clinical trials have contributed immensely to advances in patient care, there are several shortcomings in their design – they only test one drug or treatment strategy at a time, they are expensive and very time consuming. Time is not a luxury patients with a brain tumour have.
In an adaptive clinical trial, researchers can make changes to improve the existing trial, if early results suggest what is being tested isn’t working or that something else might work better.
These changes are planned and made in such a way that the trial, and the evidence it provides, remain reliable.
The flexibility of an adaptive clinical trial means that the process of developing new treatments, which are so desperately needed to defeat this devastating disease, is sped up.
Adaptive trials are not easy to design, plan or execute. Baroness Jowell said she was fearful that this important approach will be put in the ‘too difficult’ box – we are working to make sure that doesn’t happen.
From late February to May this year, we will be accepting applications for our Glioma Clinical Trial funding – a funding opportunity created to establish an adaptive clinical trial for glioma patients in the UK.
BIOMEDE is the UK’s first adaptive trial for children with a brain tumour
Led by Dr Darren Hargrave and funded by The Brain Tumour Charity, the international trial will test improved treatments for children diagnosed with DIPG – one of the most deadly and aggressive childhood brain cancers
It will cost us over £100,000 to fund this adaptive clinical trial – with your help we can run more