Patients and Public

Glioma brain tumours are among the most challenging of cancers to treat. The current standard treatments of surgery, chemotherapy and radiotherapy can have limited effect in terms of the survival time of the patient. They can also impact negatively on the quality of life of the patient during the illness.

Therefore, we need new improved treatments to be developed.

With the latest advances in technology for imaging (e.g. MRI scans) and the availability of improved methods for analysing tumour tissue samples, we have a better chance of developing potential alternative treatments, which may lead to better outcomes.

At the moment we usually treat all people who are diagnosed with a grade 4 glioma in the same way.  By studying the analysis of these images and tissue samples from a large number of glioma patients, we can develop a number of groupings, known as a ‘stratification’, of different types of gliomas. These may enable us to identify different treatments for different groups of patients. The new Tessa Jowell BRAIN MATRIX study will enable us to do this, by providing a UK-wide framework for the consistent and efficient collection and analysis of images and tissue samples. 

 

In the platform study we aim to develop the infrastructure to provide rapid and accurate molecular diagnosis and the infrastructure to deliver clinical trials of new therapies in the future.

Tessa Jowell BRAIN MATRIX is working with the NHS Genomic Medicine Service to lead the way on integrating genomic medicine into routine clinical practice for brain cancer patients in England.

Whole genome sequencing (WGS) looks at all your genes in one go by focusing on changes in genes related to your condition. The results of WGS may help diagnose your condition or suggest appropriate treatment options. The NHS Genomic Medicine Service supports the offer of whole genome sequencing (WGS) to patients.

By working closely with Genomics England and NHS England we are helping participating BRAIN MATRIX hospitals to access the NHS Genomic Medicine Service more easily for all their brain cancer patients.

The specific aims of the study can be described as follows:

1. To create comprehensive databanks of images and the pathology of the glioma tumours of a large number of patients being treated at UK neuro-oncology hospitals.
2. To conduct state of the art analyses of these images and tumour tissue samples in order to allocate patients into sub-groups of glioma types.
3. To identify if any existing approved drugs (for other cancers or illnesses) may be candidates for a clinical trial for any of the sub-groups of patients.
4. Where no such existing drugs are available, to share data with suitable pharmaceutical companies who may have the expertise to develop appropriate drugs for a clinical trial.
5. Where UK neuro-oncology research centres wish to initiate their own clinical trials, to enable these trials to utilise the data available from the BRAIN MATRIX.

The study is aiming to recruit 1,000 patients from across the UK over a period of 5 years.

As gliomas occur at all ages and their specific subtype is hard to predict before surgery, the patient population eligible for the study is broad.

The study will be open to any adult (aged over 16 years) who is newly diagnosed with a grade 2, 3 or 4 glioma and who is able to undergo a surgical procedure, including biopsy. It will also include adults with recurrent tumours, but only if the clinical team can access an appropriate sample of their original tumour for analysis.

If you think you would be eligible to enter the study, then you should first talk to your oncologist at your next hospital visit about how to be involved.

If you are not being treated at one of the primary recruitment centres and are interested in the study, please discuss it with your consultant. You may still be able to be involved; however, you will need to be able to travel to one of the participating centres.

Please note that the staff at the BRAIN MATRIX Study Office are not able to directly recruit you onto the study.

The study is now open to recruitment at our first centres and further centres will open in due course:

The following hospitals are able to recruit patients to the Tessa Jowell BRAIN MATRIX – Platform Study:

• Birmingham - The Queen Elizabeth Hospital
• London - Kings College Hospital
• Leeds - St James's University Hospital
• Liverpool - The Walton Centre
• Cambridge - Addenbrooke's Hospital - Cambridge are not currently recruiting to TJBM despite being open but patients can instead be enrolled in the Minderoo Precision Brain Tumour Programme
• Edinburgh - Royal Victoria Infirmary & Western General Hospital
• Glasgow - Queen Elizabeth University Hospital
• Nottingham - Queen's Medical Centre
• Manchester - Salford Royal Hospital & The Christie

The following hospitals are planning to open in the future:

Oxford - John Radcliffe Hospital

Involving members of the public in designing and running clinical trials, and related projects, is very important. Not only does it help us ensure the best interests of patients are always at the forefront of researchers’ minds, but it provides valuable insights into patients’ experiences that help to shape our research.

Our Study Management Group benefits greatly from patient and carer representation with the involvement of Helen Bulbeck from brainstrust and Peter Buckle. They are both an integral part of the study as co-applicants. Their role has included regularly attending meetings from the outset and being involved in the development of our patient information documents and consent procedures.

Similarly, there will be patient and/or (ex) carer representatives on our Executive Oversight Committee to help bring a patient perspective to these meetings.

The BRAIN MATRIX team also undertakes public engagement activities, for example helping run a stand at the launch of the Birmingham in Action campaign.

If you are a member of the public and would like to be involved in BRAIN MATRIX please get in touch with the BRAIN MATRIX Study Office.

These documents may be helpful to patients and members of the public:

• Lay Summary [PDF, 493 KB]