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Brain tumours kill more children and adults under the age of 40 than any other cancer

An opportunity and worldwide collaboration

by Hugh Adams

Working for Brain Tumour Research for the past eleven years has been a privilege, I have learnt so much about myself, and discovered so much more about other people and how extraordinary they can become when life delivers them the cruellest of blows.

I have had moments of despair at the speed of the progress made and the premature losses we hear of so often, but it is our campaigning and our research that pulls me round to feeling more positive.

That is where the change will come and that is where I am proudest of our achievements.

So, I am really pleased that we are now recruiting a role to join the charity and work alongside me as a Policy and Public Affairs Officer.

As you will know this is an exciting time to join Brain Tumour Research as we capitalise on the growth of the charity during the pandemic and are embarking on the All-Party parliamentary Group on Brain Tumours - Pathway to a Cure Inquiry, which we are leading on in our role as secretariat.

Reporting to the newly appointed Director of Research, Policy and Innovation, the Public Affairs Officer will work with the Head of Stakeholder Relations (that’s me) to drive forward our manifesto for change: building capacity, accelerating treatments, and increasing the national investment in brain tumour research.

Here’s the link to find out more about the role or to apply https://bit.ly/3GIXNCp

The Medicines and Healthcare products Regulatory Agency (MHRA) has launched an eight-week public consultation on proposals for legislative changes for clinical trials.

The MHRA is an executive agency of the Department of Health and Social Care and is responsible for ensuring that medicines and medical devices work and are acceptably safe.

It is consulting on a set of proposals to “improve and strengthen the UK clinical trials legislation” to help “make the UK the best place to research and develop safe and innovative medicines.”

The MHRA believes that this consultation is an opportunity to improve regulations to support clinical trials in the best interests of patients, in line with the ambitions of the Life Sciences Vision, to make the UK the leading global centre for innovative research design and delivery, across all types and phases of trials.

The overall aim is to streamline clinical trials approvals, enable innovation, enhance clinical trials transparency, enable greater risk proportionality, and promote patient and public involvement in clinical trials.

If you would like to find out more and possibly help shape the future legislation for clinical trials, click here.

This consultation is open now until 14th March 2022.

The National Cancer Research Institute (NCRI) Brain Group has published its new three-year strategy to address challenges faced in brain tumour research and improve outcomes for patients with currently unmet needs. To identify the key priorities in brain tumour research, the NCRI Brain Group held four virtual sessions, attracting over 60 participants from a range of sectors and disciplines, including NCRI Consumer Forum members, Early Career Researchers and Partners which included Sue Farrington Smith, our Chief Executive, representing Brain Tumour Research and your voice.

The priorities identified by the group are as follows:

  • Produce and publish a position paper on the challenges faced in brain tumour research
  • Develop a window of opportunity study, early-phase trial or basket study for glioblastoma patients
  • Improve outcomes for brain tumour patients with unmet needs
  • Improve outcomes for patients with poor prognosis
  • Build and strengthen links with international groups and prioritise opening international studies for UK patients with rarer brain tumours
  • Support and provide guidance for a broad range of research proposals across the brain cancer community

You can find out more about the NCRI Brain Group strategy here.

During Health and Social Care Questions this week the Secretary of State has committed to a ‘war on cancer.’ This is a very welcome commitment which reflects positively on the work we have, as a part of a charitable cancer community particularly under the One Cancer Voice banner, been doing individually and collectively to push cancer to the top of the political agenda. Within that push our specific focus will always be on the importance of research.

This vital importance of research was vividly illustrated on a call we joined this week with one of the world’s most eminent paediatric neurosurgeons and senior brain tumour scientists. During his talk, he spoke of how little progress had been made in the prognosis of some glioma patients with just Temozolomide and lately Tumour Treating Fields being new to the worldwide portfolio and that this was “remarkably disappointing”. He believes the way forward with glioblastoma, for example, to be earlier clinical trials, as too many take place at the point of recurrence, the stopping of the search for a magic bullet with the realisation that progress will come from a multi agent approach and a focus on the genesis of these tumours to find out what gets them going. He feels that without these approaches then a brain tumour diagnosis will remain “life changing, frightening and devastating.”

In a research news update a fortnight ago we linked to Dr Fred Gentili telling his story of  a brain tumour surgeon becoming a brain tumour patient. Sadly Dr Gentili died on Saturday – our condolences to his family friends and colleagues. He is remembered here and this quote from him is hugely powerful, "The solution to my problem is not going to be surgery, it's going to be research, funding, molecular biology, looking under the microscope to check the cells. The way we're going to solve this problem is by studying it, by researching it."

Is there better research abroad, are we behind other European countries in terms of what we can offer brain tumour patients in the UK? We have been asked this many times this week by journalists (keep your eye out for a piece on this in one of the Sunday papers this week – I’ll link to it next week in case you miss it). According to the surgeon/scientist mentioned earlier it is worldwide collaboration that is key in adding pieces to this complex brain tumour jigsaw. Even if the resources are massive in the US, even if the Europeans can progress privately funded cell work ahead of the NHS, it is the collaborative approach that will win and that makes UK based discovery science as vital as ever.

So it is difficult and families will research, access and self-fund treatment wherever they can find hope but the hope comes from the research too ( see 2021 – a great year for our brain tumour research centres) and as individual and family circumstances change our cause remains the same.

I cannot think of a campaigner who encapsulates this more than fundraiser, campaigner, media ambassador and brain tumour research campaigner Nicki Hopkins. Many of you will know the story of Nicki’s husband Dave and the funding the family, and the community, did to get him to Germany for treatment before his brain tumour took him. Now Nicki, and Dave’s daughter Lydia, tell their story of anguish and anger to politicians, to TV journalists and to fundraisers in their community. They inspire us, as they inspire politicians, as they inspire those who see them on the media (including social media) and the more people that are inspired, the more people are working to deliver the funding we need to make a difference in the UK and play our part in the worldwide crusade to find a cure for brain tumours.

What an extraordinary movement to be a part of, it has transformed my way of thinking and I am so grateful to those of you I have met on the way.

I’m looking forward to seeing applications from those ambitious public affairs and policy folks who would like to join us.

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