We're advising the Department of Health and members of a Task and Finish Working Group (TFWG) on the barriers to brain tumour research and how to break them down.
There has been a failure in ambition, vision and leadership by successive Governments to tackle the burden of brain tumours on individuals and society, and a severe underinvestment in the infrastructure (facilities, resources and workforce) needed to conduct research into brain tumours.
The Department of Health set up the TFWG to address a need to increase the level and impact of brain tumour research in response to a public petition started by Maria Realf, who lost her brother Stephen to a brain tumour.
Following evidence presented to the Petitions Committee, the group is considering the barriers and opportunities, as well as related issues within the wider research and development landscape.
The group has stated that it will not address whether the current funding level for research into brain tumours is appropriate. Group members, including major charitable funders of research and clinical experts, acknowledged that fundamental barriers in the research infrastructure - facilities, resources and workforce - must first be broken down to improve the level and impact of research.
The TFWG will release a report (expected in late 2017), which will make recommendations on what needs to be done to break down barriers to research.
In 2014 we convened the very best brilliant minds and world leaders in brain tumour research. In response we made a commitment in our research strategy to investing in the research infrastructure.
As the biggest funder of brain tumour specific research in the UK, we are well aware of the barriers in research into brain tumours which limit progress and undermine our vision of a world where brain tumours are defeated. Our role is to ensure that those commitments are understood and supported by Government.
The TFWG has identified six priority areas. These include a more joined up system for collecting tissue samples, increased participation in clinical trials, removal of undue barriers to health data and clear career pathways to engage clinicians in research in this field.
Ahead of publication of the TFWG report, here are some of the key asks that we would like to see addressed:
In 2014 we committed funding to this area of work and have briefed the TFWG on the challenges and potential solutions.
The Government need to support the infrastructure needed for a biobank or collection of biobanks to succeed.
One way we have invested in the workforce is through clinical training fellowships, designed to allow clinicians to continue to practice medicine alongside their research. We are also investing in future leaders to identify excellent early stage non-clinical researchers and support them through their career to enable them to establish themselves and develop their research in the brain tumour field.
Government must show leadership and provide incentives, opportunities and clear career pathways to individuals who can excel in research into brain tumours.
We have been asked to draft a section of the final report to outline undue obstacles that prevent researchers accessing health data and provide a case study of our proposed data registry.
It is vital that the government supports health data for research by addressing the uncoordinated regulatory landscape around data access.
Our HeadSmart campaign for early diagnosis of children and young people has helped reduce time to diagnosis. We are now funding research into routes to diagnosis for adults. We are also funding a scheme to identify and implement molecular testing for those affected by a brain tumour.
We want to see routine biomarker testing to support more detailed analysis of tumour type.