A brain tumour diagnosis can be devastating. You may find it hard adjusting to your new life. Whether you're experiencing side effects from treatment, finding it hard to make sense of your brain tumour experience or wondering how to make the decisions that are right for you, it can be difficult to adapt and find your 'new normal'.
Breaking News: Brain tumour patients will lead the way in new global cancer databank
Today sees the launch of the Universal Cancer Databank (UCD), which aims to gather information from people diagnosed with cancer around the world to speed up progress towards a cure.
This project by the Eliminate Cancer Initiative (ECI) follows the work we have done to create our own databank, BRIAN (the Brain tumouR Information and Analysis Network), which we are building with the support of our community.
BRIAN (Brain TumouR Information and Analysis Network), designed and led by people living with brain tumours (adults and children) and their carers, is our free global web-app enabling patients to learn from the experiences of others, make better-informed decisions about the disease and accelerate research to find a cure. BRIAN offers day-to-day strategies, hints and tips to help you move forward.
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) or someone with lasting/enduring power of attorney for the patient.
Can a family member or carer access BRIAN?
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.
Can I access BRIAN if no consent is given?
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.
Where will the brain tumour data come from?
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.
Who will access my data?
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.
Why can’t I participate if I live in Scotland or Northern Ireland?
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, so it's taking a bit longer than expected, but we are working hard to ensure the correct measures and permissions are in place to collect this data. If you do choose to complete the pre-registration form, we'll be in touch as our progress in Scotland and Northern Ireland develops.
Can I participate if I live outside of the UK?
Our aim is to have BRIAN accessible by all brain tumour patients,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 may not be available at the initial launch, we will be working to bring together data from healthcare providers and researcher across the world in the future. If you live outside of the UK and 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.
Will BRIAN replace other support services that The Brain Tumour Charity provides?
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.
How can I access BRIAN?
BRIAN is a free web-app accessible on laptops, tablets and smart phones. We aim to launch BRIAN in autumn 2018.
Can I learn about the experiences of others living with a brain tumour?
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
What about clinical trials?
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.
When can I start using BRIAN?
We are working hard to develop our databank and aim to launch it in autumn 2018. If you would like to consent to us accessing your medical records and be among the first to join BRIAN, please fill in our online form (hard copies are also available). This 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 the web-app development.