The hearing results
The hearing led to the establishment of a Task and Finish Working Group. This formed part of Children with Cancer UK’s existing commitment to making paediatric brain tumour research a priority. In 2014 we ring-fenced funds of £3million to be spent over a three-year period on innovative new brain tumour research- our Brain Tumour Initiative. We have funded many other brain tumour projects besides.
Brain tumours kill more children and adults under 40 than any other cancer, with brain cancer incidence on the rise. In 2014, brain tumours received 1.5% (£7.7 million) of the £498 million national spend on research into cancer. At this rate, it could take 100 years to catch up with developments in other diseases. (1)
The Task and Finish Working Group (TFWG) came about thanks to an e-petition created by Maria Lester, whose brother Stephen sadly lost his battle with Astrocytoma in 2014. Receiving over 120,000 signatures, the petition led to a report by the Petitions Committee, which stated: “Successive governments have failed brain tumour patients and their families for decades. The Government must now put this right.” A subsequent debate at Westminster Hall was attended by more than 70 MPs, before then Minister for Life Sciences, George Freeman MP, committed to the establishment of the TFWG.
The group brought together a range of stakeholders in the field
The group was chaired by Professor Chris Whitty, Department of Health Chief Scientific Adviser. It brought together a range of stakeholders in the field, including clinicians, charities, relatives of patients and others to discuss how to address the problem of under-funding.
“All involved agreed that additional research is needed and funders stand ready to invest more in brain tumour research.”
The main issue they identified was that since brain tumours have been under-funded for so long, this has, for a number of reasons, reduced the number of fundable research applications. So a key focus for the Group is to examine how barriers to funding can be removed, to generate more high quality funding applications.
The TFWG came up with 9 key conclusions, which are summarised below:
a.) An important aid to brain tumour research will be establishing dedicated Brain Tumour Research Centres, like the Centres of Excellence currently funded by Brain Tumour Research.
b.) Funders should be encouraged to state explicitly to the research community that they particularly welcome applications for research into brain tumours.
c.) An important priority should be improving the way we collect and store tissue from patients, to build the capacity of available samples for researchers.
d.) The UK has a strong neuroscience research community, but it is not as well linked with the brain tumour research community as it could be. Bringing these communities together would be potentially very valuable.
e.) There are drugs that have been developed for other diseases, which could be used to treat brain tumours. ‘Re-purposing’ of drugs is something the Association of Medical Research Charities (AMRC) and Department of Health (DoH) have been meeting with stakeholders to discuss. Their recommendations should be embraced.
f.) Organisations are already putting together research priorities for brain tumours, based on consultation with patients and clinicians. The priorities of these organisations, including the James Lind Alliance and Cancer Research UK should be embraced.
g.) More dedicated training and research opportunities for doctors in neuro-oncology should be made available. Royal Colleges should provide neuro-oncology as a sub-specialism and NHS Trusts should consider dedicated neuro-oncology posts within current fields like neurology or neurosurgery.
h.) Brain tumours are rare, and the research community small, spread across many scientific disciplines. More coordination and cooperation within the community is essential and applying for funding to allow this to happen should be considered.
i.) People with brain tumours have clearly stated that they want their health data to be used for research to speed up development of new treatments. Regulators should respect these wishes. NHS Trusts and other bodies should work closely with medical research charities on improving data access.
The report provides a very detailed breakdown of the six main opportunities to make strides in brain tumour research
These are summarised below:
1. Biobanking: A significant opportunity for improvement is available in the prospect of establishing a centralised tissue bank for adult brain tumour patient samples. This could be accessed by researchers around the country and link with the work of the 100,000 Genomes Project carried out by NHS England.
2. Neurosciences: While investment in brain tumour research and treatment has been relatively small, the UK has strengths in a number of areas of neuroscience, including developmental neuro-biology and stem cell biology. The infrastructure developed as part of existing neuroscience work should be used to further brain tumour research.
3. Diagnosis: Late diagnosis of brain tumours is common- the majority are diagnosed in an emergency setting. Improvements are needed, including enhancing detection technologies, for example by developing non-invasive diagnostic scans. Also, improving routes to diagnosis, for example through increased awareness amongst both healthcare professionals and the general public.
4. Treatment: there are a number of opportunities to develop and improve treatment practices.
a.) Ensuring more collaboration between the multi-disciplinary teams involved in patient care is a major opportunity for better treatment outcomes.
b.) Similarly, improvements in imaging technology mean radiotherapy can be optimised, becoming safer and more effective in treating brain tumours. Proton beam therapy is an opportunity to explore.
c.) Approaches to drug development which seek to overcome the Blood Brain Barrier (BBB) and problems with treatment resistance will be important.
d.) Re-purposing existing drugs for application to brain tumours is a positive opportunity.
e.) Research into improved surgical options for brain tumours is important, as technological improvements in scanning and modelling of the brain make for better ability to remove a tumour and leave surrounding structures intact.
f.) The small number of patients diagnosed with each particular type of brain tumour poses a challenge for clinical trial success. Small patient numbers make it difficult to obtain clinically meaningful data. Investment in clinical trial infrastructure is a significant opportunity for progress.
5. Senior Research Leadership and Workforce: There are pockets of excellence in brain tumour research around the UK, but a real opportunity for improvement exists in developing and formalising leadership structures, so as to coordinate both local and national efforts. This will also draw more young researchers into the field. Establishing dedicated centres of excellence will be an important part of this.
6. Survivorship: It is critical that research into brain tumours has a focus on quality of life, so that after the completion of primary treatment more people affected have a life to return to.
Three current barriers to success were also identified:
1. Lack of pre-clinical models. A lack of models for testing of drugs at the stage before they enter clinical trials in humans.
2. Lack of clinicians with a specialist interest in neuro-oncology. For research opportunities to flourish it is imperative that dedicated training for doctors involved in the diagnosis and treatment of brain tumours exists and that time is provided in consultant posts to allow research to be undertaken.
3. Lack of cooperation and coordination. The group acknowledged that coordination had been highly effective to date in paediatric neuro-oncology, although more needed to be done. In contrast, in adult cancers, this has not been the case and more coordination is urgently needed.
4. Difficulty of accessing patient data: Government bodies face difficulties in making patient health data more widely available.
Children with Cancer UK has made funding for paediatric brain tumour research a priority in recent years. In 2014 we ring-fenced funds of £3million to be spent over a three-year period on innovative new brain tumour research. We have funded many other brain tumour projects besides.