Biobanking to accelerate research progress through centralised collection of, and access to, brain tumour tissue samples. We need to learn from every patient to ensure the advancement of new treatments for the future.
A key step to unlocking progress in brain tumour research is by increasing access to centralised tissue banks containing patient's tumour samples. Despite the importance of access to tissue, we know that routine collection for research isn't a reality yet. Nevertheless, we also know that many of those affected are prepared to gift their tumour samples for research for the benefit of others in the future.
In 2013, six year old Alfie was diagnosed with an incurable and inoperable brain tumour known as a diffuse intrinsic pontine glioma (DIPG). Very little is known about this tumour type and so Alfie's parents, Zoe and Danny, made the brave decision to donate his entire tumour to research, which was one of the first donations of its kind within the UK.
We need to radically increase the number and frequency of tissue samples being banked for research in order to improve outcomes. This will create a comprehensive resource that will enable key questions to be answered sooner.
In paediatric cancers, the limited and disparate number of cases has already resulted in centralised tissue banking. Therefore, we aspire to facilitate the centralised and increased collection of adult tumour tissue. Currently, a limited number of adult tissue samples are stored in local tissue banks across the UK, resulting in small, fragmented collections. This, together with current access arrangements, can make it challenging to get sufficient samples to study individual tumour types, especially rarer ones.
Tracking tumours over time
Brain tumour characteristics and behaviours can change over time. We must therefore endeavour to bank multiple samples from the same patient at different time points to track changes in the tumour over the course of the disease from diagnosis and surgery, to recurrence and at autopsy. This will advance our understanding of how patients can be most appropriately and effectively treated.
76% of patients responding to our survey said they would be willing to undergo an operation to collect biopsy samples from their tumour even if this surgery was not for treatment purposes and would not benefit them directly.