Barriers to research

Progress in research into brain tumours has been slow - since 1971 there has been an overall increase in survival of less than 10% for people with a high grade brain tumour, one of the poorest improvements across all cancers. This highlights the need for investment in this field of research.

To date The Brain Tumour Charity have invested £18.3 million in research and in 2016 alone we committed to investing a further £5.8 million in our current research portfolio.

In 2014, only 3.3% (approximately £7.6 million) of cancer research spend by government and the largest cancer charities was used for research into brain tumours.

Increased voluntary sector and government funding remain essential. But funding alone is not enough. Here we outline several barriers to research and what we are doing to overcome them so that rapid advances in diagnosis, treatment and care are made.

Leadership

We believe that government have a responsibility to address the lack of progress in research in this field.

Publicly funded research bodies such as the National Institute for Health Research (NIHR) and the Research Councils are open to applications from researchers working on any condition and judged in open competition. However, the priorities of institutions and researchers can be determined by the perception of Government priorities.

The Government should show leadership and ambition to create a positive research environment and promote the UK as a leader of research in the field of brain tumours. This will help create greater enthusiasm, ambition and representation in this field within public research bodies that receive taxpayers' money.

We believe the Government should set research priorities, identify where there are gaps in research funding and develop opportunities and incentives in the health and life sciences sector workforce to research in this field. The Government should also foster collaboration between charities and Government organisations to promote a better research environment.

Workforce

We know of many dedicated researchers who specialise in brain tumours. But to improve the scope and quality of research applications we need to recruit more dedicated researchers from other fields and encourage talent and breadth of knowledge in neuro-oncology research.

There needs to be more early-career opportunities for young researchers to specialize in this field and incentives for experienced researchers in related fields like neurology, neurobiology and neuroscience to apply their expertise in cancer.

Investing in Future Leaders

In 2017 we will put out a funding call to recognise excellent early stage non-clinical scientists and support them through their career, enabling them to establish themselves and develop their research in to brain tumours. This scheme will run in three parts, firstly supporting multiple Postdoctoral Fellows who are then eligible to apply for funding for Junior fellowships, and if successful a Senior Fellowship. This means that there is the potential to receive 12 years of funding. This funding is open to international applicants, however those who are successful in the third round are required to complete their research in a UK institute or university. We hope that this funding call will encourage future scientific research leaders to work on brain tumours, enhancing our understanding and leading to the better delivery of improved or new clinical treatments.

We want more medical oncologists (doctors who treat cancer with chemotherapy or medication) to specialise in neurology. Medical Oncologists currently receive no mandatory training in neuro-oncology. This is relevant as medical oncologists primarily treat cancer with drugs, whereas clinical oncologists primarily treat cancer with radiotherapy. It is more common for medical oncologists to run clinical trials for cancer drugs. If medical oncologists received training in neuro-oncology we believe more would be attracted into the field and chose to specialise in treating people with brain tumours.

We are funding Clinical Research Training Fellowships, which will include medical oncology, and will provide up to three years' support for clinically qualified, active professionals to undertake specialised or further research training in the bio-medical sciences within the UK.

Clinical Research Training Fellowships

In partnership with Medical Research Council (MRC), we fund Clinical Research Training Fellowships to provide up to three years of support for clinicians (including medics, surgeons, clinical psychologists, public health specialty trainees, allied health professionals and nurses) to undertake a PhD or other higher research degree. The scheme is designed to allow clinicians to continue to practice medicine alongside their research. We believe this scheme will encourage and support those who directly work with those affected by a brain tumour to become more interested in research, and ultimately accelerate the path to a cure.

EXAMPLE:

Alongside his clinical duties neurosurgeon Mr William Singleton has been awarded a fellowship to carry out research on a new anti-cancer drug which could potentially be used to enhance the ability of the body's own immune system to kill tumour cells. He hopes to deliver this drug using a novel technique called convection-enhanced delivery, which allows the infusion of drugs directly in to the brain through surgically implanted micro-catheters. This could become a possible treatment for malignant gliomas and Mr Singleton hopes to produce enough evidence from his research to move this therapy into a clinical trial.

The UK is an attractive destination for scientific research. A diverse and skilled workforce plays a big part in that. For example, the Samantha Dickson Brain Cancer Unit at UCL hosts PHD students and postdoctoral researchers from across Europe who drive progress in brain tumour research. At Cancer Research UK's Beatson Institute for Cancer Research, 50% of workers are from a variety of EU member states (3). We must ensure that researchers from within the EU can continue to live and work in the UK unimpeded. This includes researchers and those involved in research such as healthcare professionals, technicians and academics and students.

Resources

Investment in the research infrastructure will improve our understanding of brain tumours and help fulfil the NHS mandate to create a positive research environment across the organisation.

Biobanking is the process of collecting and storing biological samples for the purpose of research. A donor's biological samples and linked information can contribute to our understanding of sub-types of tumour and advance research.

However, the collection of tissue for banking varies widely across the UK. In many hospitals there is no infrastructure in place to collect tissue routinely, or in larger quantities.

Accelerating Biobanking

We are collaborating with neurosurgeons, neuro-pathologists, researchers, and other organisations in the brain tumour and biobanking communities to help us initiate and shape a centralised biobank, to create a single point of access for tissue. The collection of tissue is vital for increasing understanding of the biology of brain tumours. By doing this, we are ensuring that research will accelerate towards improving survival and quality of life of those living with a brain tumour.

We will also be working with healthcare professionals to ensure that multiple samples from the same patient are banked at different times, to track changes in the tumour of the course of the disease. This includes from diagnosis and surgery, to recurrence and at autopsy. This will improve our understanding of how patients can be most appropriately and effectively treated.

Additionally, we are calling on people affected by brain tumours to initiate conversations with their clinicians on gifting their tumour tissue for research.

The NHS has committed to the development of opportunities and awareness of research. However, there are often administrative barriers to set up clinical trials, patients may not be told about the opportunity to get involved in appropriate trials and there is a limit on time clinical staff can spend engaged in research in centres which do conduct research.

Clinical Trials & Research Info Line

Clinical trials are currently the best way to test new treatments before they are given as a standard of care. Our Clinical Trials & Research Info Line helps those affected by a brain tumour to look for clinical trials that they may be eligible for. We use a number of databases, including our own, to search for trials across the world, with the aim to help patients access the most accurate and up-to-date information about trials for new brain tumour treatments. We believe that everybody with a brain tumour should be given the opportunity to contribute to research. Hence, those affected can also use this line to find out more about donating their brain, tissue or biological samples to benefit research. People can also ring this line to enquire about treatment options and/or to feedback on their experiences of the NHS.

We understand the importance of clinical trials in moving treatments from bench to bedside. Currently, we co-fund nine UK clinical trials with Cancer Research UK, involving both adult and paediatric patients. These trials are testing a range of new treatments, from novel immunotherapy treatments to new chemotherapy programmes.

We want the NHS to do more to make it easier for its staff to participate in research. We believe that this will in turn help raise awareness of the benefits of involving people affected by brain tumours in research and could lead to more people with a brain tumour being asked to participate in research where appropriate.