News and Reviews

3 min read

Some campaigning weeks have what might be called 'big ticket items' taking place, meetings of the APPG or Manifesto launches for example however in other weeks the activities may be more prosaic.

This week has been primarily the latter however it still held some excitement for me as I went to Epsom Racecourse and, as you can see in the photo below, I was in the company of our great friend and Patron Caprice.

Supermodel, actress, entrepreneur and mother Caprice Bourret became involved with Brain Tumour Research following her shock meningioma diagnosis, and subsequent successful surgical intervention, in Spring 2017.

We were there as part of our fundraising partnership with the British Hat Guild and the Jockey Club and these partnerships are as a direct result of Wear A Hat Day being our flagship fundraising day.

At Epsom on Tuesday our CEO, Dan Knowles, made a rousing address to the invited supporters and our manifesto was placed on tables and available for all there to read.

So many of our supporters are like Caprice in that they support our fundraising but they support our campaigning too.

There will be more news about what happened at Epsom in next week's update.

A new targeted treatment which could transform the lives of children diagnosed with glioma has been approved for use on the NHS.

The combination of dabrafenib and trametinib can now be used for patients aged one and over with either low-grade or high-grade glioma with the genetic mutation BRAF V600E. The two drugs, which can be taken in tablet and liquid form, work together by blocking the growth signal coming from the mutant BRAF protein and can slow or even stop the tumour from growing.

Gliomas are the most common type of brain tumour in children and young people, with around 150 children diagnosed with a low-grade glioma and 30 children diagnosed with a high-grade glioma every year. A BRAF mutation is present in around 15-20% of low-grade gliomas and 5-10% of high-grade gliomas in children.

At present, fewer than 30% of children diagnosed with high-grade gliomas survive beyond five years. While the survival rate for low-grade gliomas is higher at 90%, children undergo gruelling treatment, such as chemotherapy, which has harsh and lasting side effects.

The new drug therapy has been approved by the National Institute for Health and Care Excellence (NICE) after studies showed it lessened chemotherapy side effects and improved children’s response rate to treatment.

The treatment also increased progression-free survival time from 7.2 months with chemotherapy to 24.9 months under the new regime for those with low-grade glioma, and nine months for those with high-grade disease. In some cases, tumours completely disappeared, though longer term follow-up of patients is needed.

This news was of huge interest to our community and beyond and our PR team are masters of raising awareness of Brain Tumour Research by pushing us forward to comment when news such as this breaks. So on Wednesday evening I was live on Sky News talking about this having been on ITV Anglia earlier in the evening as you can see below.

Another paediatric brain tumour headline this week was that six NHS paediatric neuro-oncology centres have been designated as Tessa Jowell Centres of Excellence.

After a detailed review process across the UK, the Tessa Jowell Brain Cancer Mission (TJBCM) has announced a new network of 15 brain tumour centres for children, of which six have been designated as excellent.

The launch of this brand-new initiative marks the first stage in a national effort to further elevate the treatment, care and research for children with brain tumours. For families and young patients, this recognition will provide confidence in the services delivered by centres in the network. The Mission found remarkable examples in every centre of NHS staff working well beyond what was asked for, to deliver excellent care for their patients.

Talking of NICE, this week we were part of a meeting regarding NG99 which is a NICE guideline that "covers diagnosing, monitoring and managing any type of primary brain tumour or brain metastases in people aged 16 or over. It aims to improve diagnosis and care, including standardising the care people have, how information and support are provided, and palliative care."

This meeting was part of an ongoing series of meetings we attend as we are particularly keen to work with industry and other charities to make sure that new therapeutics and devices are quickly appraised and where appropriate gain quick access to the UK market and can begin benefitting brain tumour patients. We have waited too long for new options and we must not let a slow regulatory system slow down the opportunities for for clinicians to prescribe and patients to benefit.

At the other end of the translational pipeline from NICE is the early stage discovery science of the type we fund at our dedicated Research Centres.

This week Annual Reviews of some of these Centres have been conducted and I asked my colleague, our Research Communications Officer, Nicola Gale (above) about this process.

Is an annual review the only way we know what is happening at our Centres?
No, we keep in regular contact with our Centre Directors, as well as the researchers that we fund, to understand what they are working on and how we can best support them in their work.
Also, as part of the Centre of Excellence strategy, we complete very detailed five-year reviews at each of our Centres (quinquennial reviews). During this process, the Centre Directors outline the research they will be focusing on for the next five years and how the Centre of Excellence Award funding will be spent. Our Scientific and Medical Advisory Board (SMAB) members review the scientific merits of the research programme, and our Trustees consider their recommendations before approving the funds.

If the partnership is for five years, why have annual reviews?
Each year, the Centres of Excellence and funded initiatives submit an annual report which includes a request for the next year’s funding. Within the annual report, they provide an overview of the research results to date, publications, and other achievements during the year. It is a great way for the Charity to understand where the research stands, and where it is heading in coming year. 
Who is present at the annual reviews?
The annual reviews are hosted by the Chair of the SMAB, Professor Garth Cruickshank and include key members of both the Charity and Centre of Excellences and funded initiatives, including:

  • Centre/Initiative Directors
  • Any relevant finance personnel from the host institution
  • Brain Tumour Research CEO, Dan Knowles
  • Dr Karen Noble, our Director of Research, Policy and Innovation
  • Our Director of Finance and Operations, Mark Stavers

Recommendations following the annual review process are reported to the Charity’s Research Sub-Committee, and then on to the rest of the Trustees.
Is it a process the researchers enjoy?

It is a great opportunity for them to share the successes of their research projects, highlight challenges or barriers to the research, and discuss how, as a Charity, we can further support their progress to find a cure for all types of brain tumours. 

What are the subjects discussed – it is just the science?
It is not just science, although that is a large component of it. Topics range from budgets for the upcoming year, career progression and achievements of the researchers that are funded and supported by the Award from the Charity, research goals for the next 18 months, and how the Charity can support the Centre by its campaigning or collaboration with other research or government bodies.
When the Charity issues a Centre of Excellence or Funded-Initiative Award, it enters a partnership with Centre Directors and host institutions; a big part of the annual review process is working out how to support each other in pursuit of our mission: a cure for all types of brain tumours. 

That is it for this week. 

All things considered, and when you add in a team development day, a planning meeting for the Trustee Policy and Stakeholder Sub committee, discussions on how to make sure our website properly illustrates all we do in the brain tumour campaigning space and getting ready for a small celebration to mark Brain Tumour Research's 15th birthday, it hasn't been a quiet week at all!

Wishing you all a peaceful time until next Friday when we will be back with another campaigning update.

Hugh and Thomas

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