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The Brain Tumour Data Accelerator

How our new project with Imperial College London aims to accelerate a cure through linked data.

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Short Summary

Of more than £700m spent on cancer research each year, less than 3% is spent on brain tumours. This is largely because it’s difficult to gather the data needed to make progress. But, our new project – The Brain Tumour Data Accelerator – aims to change this.

On this page:

Click the links above to find out more about this exciting study.

Complete the survey

The below survey has been designed to help us understand more about what concerns people living with brain tumours or their loved ones may have with data sharing, so that we can address these appropriately ahead of going live with the project. 

The BDTA Team

See our current team members working on the study.

Purpose of the Study

The Brain Tumour Charity believes that fighting brain tumours on all fronts through research, awareness and support is the only way to save lives, reduce long-term disabilities and help everyone with a brain tumour and their families.  

Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. Over £700m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours, mainly because it is difficult to gather the large amount of data needed to make progress. 

That’s why we are working with researchers from Imperial College London to find ways to improve the quality of life of people living with brain tumours and find cures. The Brain Tumour Data Accelerator (BTDA) project is one way we are doing this. It aims to collect linked and anonymised data from at least 1000 patients from selected centres treating brain tumours.  

Linked data means we ask centres to combine the different forms of data connected to a patient, e.g. tumour types, scans, treatment options, ethnicity etc… so that we can get an overview of what that individual’s medical journey has been.  

Having this linked dataset means researchers are able to look for patterns and trends in the data to accelerate a cure and improve the quality of life for those living with a brain tumour. 

How the study will be conducted

The research team will collate data from various centres across the UK. This is a long term project, but to ensure that it is carried out efficiently, the team will start with data from two centres initially and then slowly incorporate others. 

Each centre will link the data for their patients. This data is then anonymised and sent to the team, who will make it available in one safe and secure portal available for researchers, including academics and life science industry* to access. Researchers log into the platform using multifactor authentication (an electronic authentication method in which a user is granted access to a system only after successfully presenting two or more pieces of evidence to an authentication mechanism, e.g. phone or email address). The BTDA project team will provide researchers with examples of how the data should be used to ensure it is understood and used securely.  

Anonymising this linked data means patients remain unidentifiable, but researchers can still gain valuable insight into any patterns or trends occurring in patients with similar tumours or following similar pathways.  

The BTDA project team are not responsible for gaining consent to this data due to it being anonymised by the time it reaches the team – this lies directly with the centres. If a person wishes to have their data removed from the database, they must contact their centre directly, who will then inform us what data needs to be removed.  

The BTDA Team

Participating Centres

Dr. Matthew Williams: Consultant Clinical Oncologist, Imperial College London

*The life sciences industry comprises companies operating in the research, development and manufacturing of pharmaceuticals, biotechnology-based food and medicines, medical devices, biomedical technologies, nutraceuticals, cosmeceuticals, food processing, and other products that improve the lives of organisms 


The Brain Tumour Data Accelerator (BTDA) is a project that aims to combine clinically relevant data from at least 1000 adult primary brain tumour patients into one database from different centres. The aim is to accelerate research into brain tumours, and thus improve care, treatments and outcomes for people with brain tumours. 

The project may not help people currently impacted by a brain tumour, as research typically takes many years. People have often told us that they would like to be able to share their data to help those who will be affected in the future and the BTDA is a way of achieving that. It will enable us to help researchers in the future to understand:

  1. How imaging relates to tumour factors, such as genetics
  2. How treatment affects imaging over time
  3. Whether there are genetic and imaging factors that can pick which patients will response best to different treatments

The project covers the ten-year period from 2012 to 2022. We may update it as time progresses.

This is a phased project with new centres taking part at different times, if your centre is not involved, talk to them and your clinician. Centres currently taking part are:

  • Imperial College Healthcare NHS Trust, London

We are in discussion with several other centres.

Yes. Sadly, we know that survival from brain tumours is low, and so many of the people diagnosed will have died. Their data can still help other patients in the future.

All types of brain tumours which affect adults, but we will start by trying to select some of the more common ones.

Adults only. No children are included in the project. There are no plans at the moment to run this project for children.

No, BTDA is a UK only project, with the first phase of the project covering England only. The devolved areas of Scotland, Wales and Northern Ireland will be covered in different phases after the first phase has been completed.

The BTDA will only collect data on primary brain tumours. However, it may be possible, depending on individual cases and survival rates, that a person who has lived beyond their primary brain tumour and had a secondary brain tumour might be included.

No personal data is being provided and used for the project. All patient participants will be given an individual, unique identity number to pseudonymise the data.

You can withdraw from the project at any time by contacting your centre. They will inform the project team which identity number should be excluded from the study.

Researchers and clinicians will be able to access the data which will be stored in a Trusted Research Environment (TRE) held by The Brain Tumour Charity. In order to access this TRE, researchers will need to send a request to the Data Access Request Board outlining why they want to access the data and what they will do with it. Once approved, they can access the data in the TRE, within EU and International data protection regulations.

If your treatment took place in England, you can participate, regardless of where you live.

No, it is a data-based research study only collecting data retrospectively.

We will provide an update on the project through the Brain Tumour Charity website, and through social media. We expect that different projects will use the data available in the BTDA, and their results will be completed at different times. Summaries of all initiatives that leverage the data from the BTDA will be published by the Charity.

FAQs for Healthcare professionals and NHS Trust staff

The Brain Tumour Charity

Imperial College Healthcare NHS Trust are leading the project, providing technical input and support. The Chief Investigator is Dr. Matt Williams, Consultant Clinical Oncologist. The project sponsor is The Brain Tumour Charity.

The Brain Matrix study is only for people affected by gliomas and tracks patient data as it is occurring (prospectively).  The BTDA is a retrospective data collection study that covers all types of adult brain tumours.

Previous research has drawn upon routine clinical nationwide datasets to understand national incidence, outcomes and treatment in brain tumours.  These national datasets contain coded data on treatment, hospital admission, radiotherapy and chemotherapy.  However, there is no imaging data, and very little on pathology, treatment or patient outcomes.

People who are interested in participating in the study can find out more here: https://www.thebraintumourcharity.org/about-us/our-research-strategy/what-were-funding/the-brain-tumour-data-accelerator/#h-participating-centres

People can contact their centres directly. However, if there is a question for the study team, they can be reached via email:research@thebraintumourcharity.org

As the data being collected is pseudonymised and no personal details are included, if their treatment took place in a hospital in England, yes, they can participate.