We’ve designed BRIAN with the help of people living with brain tumours (both adults and children) and their carers.
If you’re still unsure about how it can help, watch Jess’ video as she explains it in a little more detail.
BRIAN (the Brain tumouR Information and Analysis Network) is a new way for those affected by a brain tumour to learn from each other's experiences and about different parts of the journey.
BRIAN is a databank – which isn't as scary as it sounds. It's somewhere where we'll securely and anonymously store data about people's treatment, tumour types, experiences, side-effects, decisions and more, and then gain insights into all different types of brain tumour and help us reach a cure quicker. Up till 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.
BRIAN will offer those that have consented a unique service by enabling them to combine official medical records with real-time patient information about their diagnosis, treatment and the impact on quality of life. Another unique feature of BRIAN is that it will allow healthcare professionals to benchmark their performance against that of other centres to highlight any variation in service provision.
The only way BRIAN will work properly is if people living with a brain tumour share information about what they've been through and are currently experiencing.
We want you to join BRIAN and give your consent for us to access your medical data – anonymously – so that when we launch our BRIAN web app, we have enough useful information to benefit everyone.
Aside from your name, these are the details we need to request your data.
*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.
If your loved one has sadly passed away from a brain tumour, you can still contribute to BRIAN on their behalf.
By telling BRIAN about your loved one's experience, in memory, you can provide potentially life-saving information to others affected by a brain tumour, help shape future research for scientists and allow clinicians to make better-informed decisions – a lasting way to make a difference and allow your loved one's memory to live on.
To contribute their information, please complete this expression of interest form and we'll be in touch once we have completed the legal process of approval for accessing and using medical information posthumously.
Currently, we are asking for patients with primary brain tumours to give us access to their medical records to help us build BRIAN. So, 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 patient but can also be parents if the person is under 16.
Yes, if you would like a family member, friend or carer to be able to access BRIAN (once it's live) on your behalf, you can add their details as part of the patient consent form. However, it is important that they do not complete the consent form on your behalf unless they are 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.
To ensure that BRIAN has a lasting impact on the lives of those living with brain tumours, we ask everyone to consent to sharing their medical records. BRIAN is designed and led by people living with brain tumours who want to make better-informed decisions about the disease and accelerate research to find a cure. So, the key to the success of BRIAN is in the community's willingness to share information for mutual benefit.
Patient medical data will be applied for and acquired from England and Wales' national data-sets with the appropriate consent
*. Patients and carers will also be able to upload real-time information about their diagnosis, their treatment (both prescribed and non-prescribed) and the impact it has on their quality of life.
(*) Scotland and North Ireland will be included in later phases. We welcome quality of life data from patients in these areas.
BRIAN will use electronic medical records provided to us directly and securely by the official record-holders such as NHS Digital and Public Health England. Those that have joined BRIAN will be able to securely view their own official records through BRIAN and combine them with their own personal records and quality of life data, creating an incredibly informative set of records.
We welcome participation by those who live in 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 Scotland and Northern Ireland is slightly different to that of England and Wales, 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 Scotland and Northern Ireland develops.
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.
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.
Patients will share their data with carers and family members as well as with others living with the same disease through anonymised reports. Doctors and scientists can also access reports on groups of patients (anonymously) to help improve outcomes and speed up research into brain tumours. Rest assured, we will protect your privacy. Full details are included within the Patient Information Sheet within the sign-up process.
No. The launch of BRIAN will not affect our other services and we will continue to offer a wide range of inclusive and accessible services for everyone affected by a brain tumour, whether you are signed up to BRIAN or not. Please visit Get Support for more information.
BRIAN will be designed so that patients and their carers can compare their progress and experiences with groups of other individuals who have the same brain tumour, helping them to make better-informed decisions about their treatment to get the best possible outcome.
If you would like to connect directly with other people living with a brain tumour our Information and Support Team will be happy to help you. You can find out how to do so on our Facebook Support Groups
Clinical trials are a vital step in making sure that new treatments reach patients. Only 3% of brain tumour patients are currently enrolled in clinical trials, compared with 7.5% of cancer patients overall, yet research shows that people want to be asked. With BRIAN, we are determined to address this issue. Through BRIAN, patients will identify potentially suitable clinical trials based on their brain tumour type.
We are working hard to develop BRIAN and aim to launch it in Spring 2019. If you would like to consent to us accessing your medical records now and be part of the BRIAN community, please fill in our online form (hard copies are also available on request). Your consent will give us permission to get your medical records and add them into BRIAN so that you, and others affected, will have enough useful information to review when it launches. We will keep you updated with our progress through regular e-newsletters.