Have you been diagnosed with a brain tumour? Order your free information pack.

The Brain Tumour Charity asked to lead on discussions around biobanking and early diagnosis

On Monday The Brain Tumour Charity attended the second meeting of the task and finish working group on research into brain tumour (TFWG) which was set up by the Department of Health to address barriers to research.

The Brain Tumour Charity have been asked by the TFWG to lead on discussions around biobanking and early diagnosis and work closely with others to support medical-oncology sub-specialisation. We were asked to update the TFWG on the Biobank Consensus meeting which we held in December, at which we gathered together leading UK experts and patient representatives to discuss our ambition to improve the collection and availability of biological samples for research. 

David Walker gave an update on our HeadSmart early diagnosis campaign and highlighted issues around access to cancer registry data for researchers, an issue which our policy team will be addressing in the upcoming year.

Other areas of discussion for the TFWG included an overview of global brain tumour research activity, and update of the work of the National Cancer Research Institute Brain Tumour Clinical Studies Group, and opportunities to align priorities with other rare disease areas or brain related conditions.

We are pleased that the TFWG is focusing on issues such as biobanking and early diagnosis which we raised in our A Cure Can’t Wait strategy. We have long recognised that the lack of routine collection of tissue into biobanks has hindered the ability of researchers to access samples in order to analyse genetic differences of tumours and develop more targeted therapies. We also understand the importance of early and accurate diagnosis to save lives and reduce long term disability and we are funding research to investigate the journey an adult takes to diagnosis.

We know that simply putting more money for research into brain tumours is not enough. Government leadership and investment in people, resources and infrastructure is essential for progress in research. Addressing those barriers to research will make your money go further. .

The TFWG has been established to address some of these issues and we will continue to provide updates on its work. The next meeting of the TFWG will take place later this year and a full report will be published by the Department of Health in due course.

Your voice matters

By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.