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BRIAN – our brain tumour databank

What is BRIAN?

BRIAN (the Brain tumouR Information and Analysis Network) is our upcoming free web-app for phones, tablets and laptops. It’s a new and unique way for people affected by a brain tumour to learn from each other's experiences at every step of diagnosis, treatment and beyond.

BRIAN is a databank – which can sound like a scary term. But BRIAN provides secure and anonymous storage of data about people's treatment, tumour types, experiences, side-effects, decisions and more.

This data will be used to help gain insights into different types of brain tumour and help us reach a cure quicker. Until now, there's never been an easy way of learning, on a large scale, how and what other people living with a brain tumour have been through. BRIAN will change that.

People’s healthcare data, from England initially, will be loaded into BRIAN. For people who give us their consent, we’ll be able to offer a unique service to help them combine their official healthcare records with real-time information about their diagnosis, treatment and the impact on their quality of life. Their experiences will then be able to help others as their data will be shared, anonymously, with those living with similar brain tumours, helping them to be better informed about any decisions they need to make.

Why join BRIAN?

The only way BRIAN can make a life-altering change and accelerate a cure is if as many people with a brain tumour share what they've been through and are now experiencing.

We need you to join BRIAN and give your consent for us to access your healthcare data – which will be anonymised – so when we launch our BRIAN web-app, we have enough information to benefit everyone.

By joining BRIAN you’ll consent to add your healthcare data to data about people with brain tumours, of all types. You’ll be able to see where your treatment journey is the same as others, and where it differs.

By doing this, you’ll contribute to the future of research into brain tumours. Information from all our BRIAN members will be gathered and made available for researchers. The valuable data about your (anonymous) experience will show the research community what needs to be done next and highlight areas that need urgent attention. Rest assured, we’ll protect your privacy. Full details are included within the Patient Information Sheet within the sign-up process.

Joining BRIAN is a great way for you to be involved in research to make a life-changing difference without taking up much of your time. You can make a valuable difference to those affected now, and in the future.

Information on quality of life is just as important as healthcare information from institutions like the National Health Service (NHS) and Public Health England (PHE). We believe that everyone should be able to live life well with a brain tumour. So, when you join BRIAN, we’ll also offer you the opportunity to tell us about the things that impact your everyday life.

BRIAN won’t replace our other support services. We’ll continue to offer a wide range of inclusive and accessible services for everyone affected by a brain tumour, whether you’ve signed up to BRIAN or not.

Please visit Get Support for more information about our support services for everyone affected.

Join BRIAN

Who can join BRIAN?

Registration to BRIAN is now open for people with a primary brain tumour who have had treatment under the NHS in England.

For the initial launch of BRIAN we can accept registrations from anyone in England with an NHS number. We do intend to extend BRIAN to include people with NHS or CHI numbers from Wales, Northern Ireland and Scotland in the future. We’re currently working on this separate application process.

However, if you live outside England and you’d like to let us know you’re interested in joining BRIAN when possible please register an expression of interest and we’ll contact you as soon as this is available for you.

Where possible, the person with the brain tumour should complete the consent form themselves. Only the person with the legal authority to make medical decisions should complete the form. This is usually the person with the diagnosis, but can be a parent if the person is under 16.

If you’d like a family member, friend or carer to be able to access BRIAN (once live) on your behalf, you can add their details as part of the patient consent form. However, it’s important that they don’t complete the consent form on your behalf unless they’re your lasting/enduring power of attorney, or (if under 16) your parent. A family member, friend or carer can also be added or removed once BRIAN is live later this year.

We aim to include other people’s journeys in future versions of BRIAN. So, if your loved one’s sadly passed away and you'd like to register your interest in sharing their medical records with BRIAN, please complete an expression of interest form and we'll be in touch as soon as possible.

What you'll need to sign up

Aside from your name, these are the details we need to request your data.

  • Your NHS number*
    Your NHS number will be at top of any letter from your GP or hospital. It has 10 digits in a xxx xxx xxxx format. If you can't find it then please call your GP as it's not available online.
  • Date of birth
  • Email address
  • Telephone number

*If you are a parent, please have the NHS number and date of birth of the person with a brain tumour ready when completing the sign up form.

Can I sign up by post?

To join BRIAN by post, please download the appropriate PDF form and post it to the address below:

Post to: BRIAN, The Brain Tumour Charity, Hartshead House, 61-65 Victoria Road, Farnborough, GU14 7PA.

How can I get involved if I live in Wales, Scotland or Northern Ireland?

We welcome participation by those who live in Wales, Scotland and Northern Ireland, so if you would like to take part, and live in these areas, please complete the pre-registration form. The process for Wales, Scotland and Northern Ireland is slightly different to that of England, but we are working to ensure the correct measures and permissions are in place to collect this data in a later phase of the project. If you choose to complete the pre-registration form, we'll be in touch as our progress in Wales, Scotland and Northern Ireland develops.

Can I participate if I live outside of the UK?

Our aim is to have BRIAN accessible to all brain tumour patients and those affected by a diagnosis, to share information and experiences across the globe and accelerate research to find a cure. Whilst participation by people who live outside of the UK will not be available at the initial launch, we will be working to bring together data from healthcare providers and researchers across the world in the future. If you live outside of the UK but would like to take part in the future, please complete the pre-registration form and we will keep you updated on our progress to bring BRIAN to your part of the world.

Progress update

The Charity has been successful in our data applications to both NHS Digital and Public Health England, and have received the first lots of data. We are now working on the database to store and share this information in a meaningful way.

We are also continuing to develop our patient portal, which is an interface or screen that can be used to input data such as quality of life information into BRIAN. This is an important process as it will make the information in the database accessible to people living with a brain tumour.

What you will need to sign up

  • Your NHS number
  • Date of birth
  • Email address
  • Telephone number