Update for the brain tumour community on the National Brain Tumour Research Consortium

On 11^th April 2025, The Brain Tumour Charity, working alongside Brain Tumour Research and National Institute for Health and Care Research (NIHR), provided an update for our community “Consortium to build sustainable pipeline of trials for new brain tumour therapies.” After four months of campaigning endeavour, we felt now it’s time for the second such update, again produced in collaboration, and again intended for all brain tumour stakeholders.

Latest update

Following widespread campaigning activity across the charitable brain tumour sector, including recent meetings and subsequent communications with Health Minister Ashley Dalton MP, some progress has been made on issues of concern to all of us. Many of these issues were raised at the May 2025 meeting of the All-Party Parliamentary Group on Brain Tumours  (APPGBT) and what follows is an update written by us but based on information from the Department of Health & Social Care (DHSC). All quotes are sourced from letters received from Minister Dalton.

The first point is that “the Government is investing in new life-saving and life-improving research to support those diagnosed and living with brain tumours”.

Allied to this, the Government recognises the significant impact of rare cancers on patients, and on their families and carers, and fully supports Scott Arthur MP’s Private Members’ Bill on rare cancers. The Bill will facilitate clinical trials in England by ensuring researchers can easily connect eligible patients.

The NIHR has been working closely with the new National Brain Tumour Research Consortium to ensure their recently submitted funding application is robust, ambitious and flexible, enabling the immediate launch of trials that are ready to begin following the award, promoting the development of new studies, and supporting the expansion of existing research throughout the lifetime of the consortium.

As we updated on 11^th April 2025, it is hoped that £20 – £25m of the £40m, originally committed by the Government to brain cancer research in 2018, could be accessed as the National Brain Tumour Research Consortium aims to drive a step change in brain cancer research, ensuring the most promising late stage clinical trial opportunities are made available to adult and child patients.

Following the completed application submission, peer review and NIHR funding committee assessment will begin immediately. Time has been set aside to ensure the funding committee can convene and make a timely decision, and this is expected in early November 2025.

NIHR and Government are keen to emphasise that the consortium isn’t the only way in which brain tumour research can be funded and that applications to existing, open funding programmes remain. Early engagement with NIHR’s Research Support Services (RSS) is encouraged to ensure the most appropriate funding stream can be found prior to submitting an application.

“Brain cancer research will continue to be a priority, and the NIHR is committed to furthering investment in and support for high-quality brain tumour research.”

The NIHR continues to encourage and welcome more funding applications for such research.

In addition to funding research investment in research infrastructure, such as biomedical research centres, it’s delivering important clinical research, including trials.

Addressing specific points raised at the May 2025 APPG meeting

The DHSC is committed to ensuring that NIHR funding panels include the right expertise. The NIHR explicitly seeks independent peer review with relevant experience in brain tumour research, and related aspects such as running clinical trials, for applications that are considered by the full committee. The NIHR is working with the community to encourage subject matter experts to apply to become committee members, so that it has the full range of expertise within its committees. NIHR is keen to highlight its participation portal for expert members of funding review committees and encourages sign-up from experts in brain tumours: Become a professional committee member | NIHR

The NIHR provides feedback at multiple stages of the application process, and it is exploring how to improve this. NIHR funding is highly competitive and the success rate for brain tumour research funding applications is broadly in line with that of other research areas, but it is keen to support more high-quality applications in this field. NIHR has committed to reviewing how it provides feedback and to inform this work will seek input from applicants to better understand their experiences.

Information on NIHR-funded projects and funding opportunities is publicly available via the NIHR’s Funding and Awards and Open Data platforms. More information can be found at www.fundingawards.nihr.ac.uk and www.nihr.opendatasoft.com, respectively.

Information for patients on all brain tumour projects that are supported for research delivery by the NIHR can be found on the portal for patient access, Be Part of Research, at www.Bepartofresearch.nihr.ac.uk This platform allows individuals across the UK who are interested in taking part in research to find studies that are relevant to them and sign up. The NIHR has recently launched a Be Part of Research campaign to boost public awareness and involvement, especially from underrepresented groups. The ultimate objective is for Be Part of Research to provide a single, comprehensive list of actively recruiting research, regardless of who is funding it.

As part of the 10 Year Health Plan, the Government announced an unprecedented boost for clinical trials. This includes further development plans for the technical infrastructure of the Be Part of Research service, which will ensure scalability and long-term reliability and enable closer integration with other National Health Service (NHS) systems and digital services. Additionally, a range of new features will be implemented, including an enhanced study search function that will provide more accurate, accessible and up-to-date study information and a ‘pre-screener’ that will help match volunteers to relevant research studies.

Thoughts of our CEO

Our CEO, Dr Michele Afif said:

We are pleased to see progress with the funding that was initially promised in 2018. It is great to see researchers working together to develop a comprehensive programme that will complement the £7m of funding we made available last year.

By having projects funded across the whole breadth of the research spectrum, we are more likely to discover new and better treatments for our community; an area neglected for far too long.

We will now be working with stakeholders helping to bring the consortium’s ambition to life and ensure that it has the best possible chance of being successful.”

Dr Michele Afif, Chief Executive Officer of The Brain Tumour Charity

To conclude this August update, we feel that the content is illustrative of a spirit to work collaboratively as a sector and to work alongside government and relevant funding bodies to drive real change.

This is working. Progress is being made.

However we all want change to happen quicker and to a greater extent, we have been waiting for too long.

It’s that spirit that is driving us forward and it’s that spirit that will frame our next update.