The charity was established about twenty years ago but came together as The Brain Tumour Charity about five years ago through the merger of the three largest charities focussed on brain tumours in the UK. We fund research; we offer support to those personally affected by a brain tumour and we also raise awareness and advocate for brain tumour patients across the UK.
So we’ve worked with CRUK for many years; we’ve co-funded in the clinical trial space for a number of those but when they announced that they were going to put more money specifically in to brain tumours it was an opportunity to work further with them. So the call that has just been announced is a total of £18 million; it’s looking for collaborative programmes with international aspects to it that will address some of the questions that have been highlighted and continue to be highlighted at the conference today as to where the problems are and what advances we can make for those that are affected by a brain tumour.
The main priorities that have been highlighted are everything from how brain tumours develop through to how we can diagnose them better, how we can model them better and how we can develop better drugs and take those to clinic. So it’s a broad stretch of the whole space but there are some specific questions there if people choose to answer those.
The research requirement is for it to be led by the UK, so the lead researcher will be a UK based person, but we would expect it to be an international collaboration.
The Brain Tumour Charity is the largest global funder dedicated to brain tumours. We have a number of other funding routes, this is just the one that we’re sharing with CRUK at the moment. We worry about… we have two goals in the charity – one is to double survival and the second is to halve the harm. We look at both the quality of life aspects as well as the biomedical aspects of being able to treat the whole person.
Do you have patients consulting with the charity?
Yes, as a patient-led organisation it’s really important to us that we’re doing things that are driven by those that are personally affected by a brain tumour. One great example of that is that we’ve recently launched a databank called BRIAN, the Brain Tumour Information and Analysis Network. This is where patients can put their own data in, they can allow us to access their NHS data, and we can bring together the quality of life as well as the treatment data. So actually those that are going through the journey of having had a brain tumour diagnosis can make more informed decisions based upon what others ahead of them have done with the same sorts of tumours. But understanding that for some people it’s not all about survival, it’s about the quality of survival as well. So this is a piece that we’ve been working on but that with Dame Tessa Jowell has been announced a few weeks ago with the Universal Cancer Database and this in the UK will be BRIAN.
Access to data can help clinicians as well as the individual. As I mentioned, the individual can make real treatment decisions for their own treatment based upon their own levels of risk. Clinicians are able to use that data to identify and mirror best practice and researchers are able to take the data to understand the disease better to help us move forwards towards a cure.