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.