Hello everyone,
Many of you will be very aware of the allocation of £40 million for research into brain tumours made available by the Government in the wake of the death of Dame Tessa Jowell in 2018. You will likely also be aware that, through our work with the APPG on Brain Tumours and through numerous questions of Parliamentarians, plus meetings with Ministers, we have discovered a poor level of actual deployment of this money into the hands of researchers.
We have been working with key stakeholders to agree a statement and update you on progress in this area and are happy to reproduce in full below a statement we drafted for the brain tumour campaigning community. It is the first such statement and our full intention is to keep you fully informed on progress in this area, and in all areas of Government spend into research, to improve options and outcomes for brain tumour patients.
“Consortium to build a sustainable pipeline of trials for new brain tumour therapies”
A brain tumour consortium, funded by the National Institute for Health and Care Research (NIHR), with the vision to make the UK a “testbed for oncology innovation by accelerating the development of treatments for patients with brain tumours” is being developed, and is aiming for real progress in “the soonest time frame possible”.
It is hoped that £20–£25 million of the £40 million, originally committed by the Government to brain cancer research in 2018, could be accessed as the Brain Tumour Consortium aims to drive a step-change in brain cancer research, ensuring the most promising research opportunities are made available to adult and child patients.
Following a planning workshop in December 2024, where clinicians, researchers and charity representatives from across the UK gathered to discuss plans, the Consortium co-leads have been bringing together the community’s ideas to distil ambitious and innovative proposals into a structured application to be submitted to the NIHR.
The deadline for the application is July 2025.
After this, the NIHR will make a decision about the final award by November 2025.
The consortium has three co-leads;
- Dr Juanita Lopez, Consultant Medical Oncologist at the Phase I Drug Development Unit at the Royal Marsden and the Institute of Cancer Research, specialising in early phase translational drug development and the treatment of patients with brain tumours
- Professor Darren Hargrave, GOSH Children’s Charity Clinical Professor in Paediatric Neuro-oncology, specialising in tumours of the brain and spine, and the development of new anti-cancer drugs for children and adolescents
- Mr Richard Mair, Assistant Professor in Neurosurgical Oncology at the University of Cambridge, an Honorary Consultant Neurosurgeon at Addenbrooke’s Hospital
Dr Lopez said of the Consortium: “Having worked in this space for many years, this is a landmark development and is the result of all of the campaigning for change that the UK brain tumour community has been making. It is a real honour to be a part of the consortium’s application process, but it comes with huge responsibility too. We all want to improve the options and outcomes for patients in the soonest time frame possible. With my co-leads we will work at pace, with precision and with the passion we all have to make a difference informing everything we do to take forward this vital initiative.”
- In the short term, the consortium will begin by running “ready-to-launch” trials that can begin recruiting patients in the next 12–18 months
- In the medium-term, new therapies will be added to the platform trials, while promising therapies progress to randomised trials. There will also be opportunities for future emerging therapies to receive accelerator funding to join the consortium
- In the long-term, the goal is to have additional therapies progressing from platform trials to registration trials
Trials have been divided into three key themes:
- Precision therapy
- Emerging therapy
- Data/AI/Genomics
Workforce development will be an integral part of the consortium, which aims to foster clinical trial readiness and to build clinical research leadership. Key areas for improvement include training, fellowships and increased numbers of research nurses.
The consortium also has a remit to engage with all stakeholders in the brain tumour community, including the setting up of a patient advisory board, with a nominated lead and representation from a diverse range of patient groups.
Dan Knowles, CEO at Brain Tumour Research commented “At Brain Tumour Research we view the Brain Tumour Consortium as overwhelmingly positive, and we stand ready to support the NIHR and the application co-leads in their endeavours. Our support will be through the lens of working as quickly, effectively and impactfully as possible. UK brain tumour patients have waited for too long for progress and the false dawn of the 2018 funding allocation must not be repeated.”
This is the first statement of its kind and, going forward, our intention is to keep you fully informed on progress in this area and in all areas of Government spend into research to improve options and outcomes for brain tumour patients.
Researchers at the Brain Tumour Research Scottish Centre of Excellence.
On Monday, the Prime Minister announced: “action to accelerate the discovery of life-saving drugs, improve patient care and make Britain the best place in the world for medical research.” This “action” will lead to patients having “improved access to new breakthrough medicines” and the speeding up of the launch of clinical trials and access to NHS data.
Specifically, the time taken to set up clinical trials will be reduced from more than 250 days to 150 days by March 2026. This will be done by “cutting bureaucracy and standardising contracts across health service organisations.”
The Prime Minister also said the Government and Wellcome Trust, one of the country’s biggest charitable foundations, will invest up to £600 million to create a new health data research service, designed to transform access to NHS data for medical researchers.
Nicola Perrin, Chief Executive of the Association of Medical Research Charities, an association Brain Tumour Research is proud to be a member of, said:
“The announcement of a health data research service is excellent news – for patients, for the NHS and for UK life sciences. Sustained, ringfenced funding – from the Government and Wellcome as a charitable funder – is the best way to unlock the power of NHS data to transform research and to improve health outcomes.”
You can read the full announcement and further comment from stakeholders here.
At Brain Tumour Research, our view is that this has the potential to be a game changer that could drive faster progress for people with brain tumours and bring us closer to a cure. Better access to high-quality NHS data will help researchers striving to understand our disease area and to develop new options for patients. We are also enthused by the reduction in red tape surrounding the setting up of clinical trials and this speeding up of the final link from scientist to patient must be approached with urgency.
This is good news to read going into the Easter break and, like the politicians at Westminster, we will be going into recess for a fortnight.
The next campaigning update will be on Friday 2nd May.
We all wish you a peaceful time until then.
Karen, Hugh and Thomas.