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The need for more research participation opportunities

Every patient should have the opportunity to help contribute to the overall goal of meeting the needs of everyone affected by a brain tumour.

Having the option to participate in research can be incredibly important for many brain tumour patients. Alongside this, the wider benefits of driving progress towards faster diagnosis and making new treatments available for all patients are great. Unfortunately, we know that not everyone is being given the opportunity to donate their data or access potentially helpful or life prolonging treatments, and help contribute to the overall goal of meeting the needs of everyone affected by a brain tumour.

Researchers use the data and insights collected from patients involved in research to understand more about how and why tumours develop. This could lead us to further discoveries and trials of better treatment methods, with the aim of improving survival and quality of life for patients.

What different types of research are available to patients?

The type of research that may come straight to mind is participation in clinical trials. A clinical trial is an experiment that involves patients in developing a new treatment or way of managing a condition, the aim is to understand if the new treatment works, is safe, is better than the old approach, and what the best way for giving this treatment is. It can take 10-15 years or more for treatments to go from their initial design to becoming a standard treatment, with clinical trials in patients a key part of this process. The Brain Tumour Charity funds clinical trials, including the ARISTOCRAT cannabinoid trial, which is due to open soon, and the innovative BRAIN MATRIX trial platform.

However, there are a number of other aspects of research that may not be the most obvious, but are also very important. This includes biobanking tumour samples, which is the process of collecting and storing body fluids or tissue. For example, if biobanking is offered and consented to by a patient, a sample of their tumour is taken and it would then be stored to later be used to help with the understanding of the disease. Donating data is another key part of research, which patients can do already through our Brain tumouR Information and Analysis Network (BRIAN) app. BRIAN supports researchers by granting them access to anonymised user-entered patient outcome and quality of life data, and provides cost-free access to data sets from national healthcare organisations.

But not enough patients are being informed about the opportunity to participate in research.

What does research participation currently look like for patients?

Our recent Improving Brain Tumour Care (IBTC) survey showed that not even half of respondents (42%) felt informed about research participation – suggesting many brain tumour patients could be missing the opportunity to know more about their research participation options.

The survey also showed that only 35% of the people who responded were involved in some form of research, such as biobanking, clinical trials, and donating data, with only 9% of respondents participating in clinical trials. This is worrying because it shows that many patients are not being given the opportunity to gain personally from research, or contribute to the overall understanding of brain tumours. Not everyone will want to or be able to participate in research, but we want to enable more brain tumour patients to be informed about research and given the opportunity to get involved if they would like to.

The survey also showed some of the geographic differences in people being informed about, and participating in, research. The results show a 31 percentage point range (15.8%-47.1%) in England between different regions known as Cancer Alliances in patients being informed about research, and a 37 percentage point range (0%-37.3%) between Cancer Alliances in patients participating in research.

We need to see improvements in research participation if we want to see progress. The NHS Long Term Plan commits to expanding participation in research and the UK Government has committed to £40 million in funding for brain tumour research to facilitate research and bring more treatments to trials. However, only around 25% of this funding has been spent since 2018, when the funding cycle began. The All Party Parliamentary Group (APPG) on Brain Tumours are undertaking an inquiry to identify solutions to blockages that affect the ability of the scientific and clinical communities to advance options for, and the outcomes of, those affected by this devastating disease. So far the inquiry has heard evidence from the Tessa Jowell Brain Cancer Mission, clinicians, paediatric oncologists, charities, and industry, ahead of the publication of a report from the inquiry in early 2023.

All patients should be informed about and, where possible, given the opportunity to participate in research, no matter where they are in the UK. Our Research Strategy sets out our aim to invest £40 million in brain tumour research over the next five years, which we hope will provide opportunities for even more patients to benefit from research participation. Whether through involvement in clinical trials, the BRAIN MATRIX platform, or donating data via the BRIAN app, everyone should have the opportunity to help contribute to the overall goal of meeting the needs of everyone affected by a brain tumour.

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