The All-Party Parliamentary Group on Brain Tumours (APPGBT), for which Brain Tumour Research holds the secretariat, convened in London on Tuesday 10th February for its first meeting of the year.
Chaired by Dame Siobhain McDonagh, the agenda included a response to the National Cancer Plan delivered by Brain Tumour Research and The Brain Tumour Charity. You can read our blog explaining what the plan could mean for brain tumour patients here.
Attendees also heard from the three Co-leads of the National Institute for Health and Care Research (NIHR) Brain Tumour Research Consortium Bid. This consortium aims to transform outcomes for adults and children diagnosed with brain tumours by expanding access to early‑stage clinical trials, strengthening research capacity across the UK and supporting the next generation of scientific leaders.
Professor Juanita Lopez, Mr Richard Mair and Professor Darren Hargrave have brought together the community’s ideas to distil ambitious and innovative proposals into a structured funding application which has already benefited from a £13.7 million investment, with more funding announcements expected.
Prof Hargrave, Prof Lopez and Mr Mair
Professor Juanita Lopez, a Consultant Medical Oncologist at The Royal Marsden, said: “Exploring novel therapeutics is the overarching reason for the consortium, to change patient outcomes and execute change. We have ambitious aims to develop the workforce, develop infrastructure and generate data to provide to funders. A priority is capturing the breadth of therapies available to brain tumour patients.”
Questions were asked about inclusion of low-grade gliomas; whether patients without whole genome sequencing would be included in the trials; and the role of patient advocates in the consortium’s programme of work. The consortium leads expressed their commitment to supporting funding for research into work that has not been possible before, emphasising that this should be inclusive and available across the UK.
Darren Hargrave, a professor of Paediatric Neuro-oncology at University College London and Honorary Consultant Paediatric Oncologist at Great Ormond Street Hospital in London, said: “One of the unique elements of this consortium is that it is age agnostic. I’m pleased that we won’t be hindered by age boundaries and can benefit from emerging technologies and make them relevant to different types of brain tumours.”
Attendees
Addressing concerns raised by some attendees about slow progress of funding applications being approved, barriers to accessing patient trials and lack of data transparency, Mr Mair, an Associate Professor of Neurosurgical Oncology and Honorary Consultant Neurosurgeon in Cambridge, and member of our Scientific and Medical Advisory Board (SMAB) said: “We need to understand why so many patients are not being referred to trials and ensure all patients across the UK have access to equal opportunities to participate in trials.”
Mr Mair is leading on capturing real world data and advanced analytics, with a focus on electronic healthcare records being made available to improve outcomes such as access to clinical trials. Data sharing is currently hindered by governance and compliance issues, but he believes there are huge benefits of data sharing and involving patients in decision making.
Prof Hargraves added that “we want every patient to have access to whole genome sequencing”, but expressed limitations to what technology can achieve and a need to work in “a real-world scenario and explore panel sequencing."
These concerns were also raised in a debate on brain tumour survival rates, which took place on Monday 9th February. As Clive Jones MP, who spoke in the debate, rightly said: “This is why the Government must ensure equal access to high-quality tissue storage pathways across the country. It is not right that where someone lives affects the treatment they get, and thus their chances of survival.”
Chair, Dame Siobhain McDonagh (centre)
Matthew Wilson, a representative from Brain Cancer Justice raised concerns about carrying out commitments set out in The Cancer Plan and emphasised the vital need for a Specialist Lead for Rare Cancers who understands the nuanced challenges related to brain tumours and can ensure that proposals in the rare cancer plan are implemented effectively.
Dr Karen Noble, Director of Research, Policy and Innovation at Brain Tumour Research, said: "The Cancer Plan rightly places a stronger spotlight on rare and less common cancers, recognising both their prevalence and the long-standing disparities in outcomes. But with ambitious targets to increase survival rates, important questions remain around implementation, pace and prioritisation.”
“It’s important that everyone’s voice is heard and community led engagement is given attention.” Professor Lopez.
The meeting concluded with an assurance from Dame McDonagh about APPGBT’s role in advocating for change and holding Government accountable.
The Secretariat echoed this by saying: "The APPG demonstrated how this group is a force for change and a community that supports patients, and their loved ones who are fighting brain tumours. We have made powerful progress in holding Government to account on its promises, and we will continue to lead the charge on this. We are very grateful to all attendees for their support and contributions."
If you would like to learn more about the National Cancer Plan and what it means for the brain tumour community, join our webinar with Dr Karen Noble, our Director of Research, Policy and Innovation, on Tuesday 17th February at 12.30pm. Please contact enews@braintumourresearch.org to receive your Teams link.
Related reading:
