Moving glioblastoma from terminal to treatable, powered by patients
OurBrainBank is an innovative, patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients.
Our key tool is a free app that patients or carers use to track symptoms, share data with clinicians, and donate data to medical research.
OurBrainBank is a completely new approach to cracking cancer. We focus on one of the most complex and aggressive brain cancers — glioblastoma — because overcoming one of the toughest cancers may be the key to cracking them all.
OurBrainBank is designed by, for, and with people with glioblastoma.
We use cutting-edge technology to enable people to manage their disease, while turning their data into medical currency aimed at accelerating progress.
GBM patients or carers are invited to join our ethics-approved study using a smartphone or tablet app. Patients must be age 18+ and resident of the UK or US (with plans to expand further soon). Download from the Apple Store or Google Play and enter code OBBUK when prompted.
Why take part?
- Tracking symptom can help you manage your disease
- Sharing your daily data can help your medical team
- Donating your data to researchers can deepen understanding of the disease and treatments
The patient-reported data — including symptoms, mood, activities and treatments — can be analysed by researchers to spot insights, accelerate learning, and speed up clinical trials.
OurBrainBank is a powerful community of people affected by GBM supporting each other through video calls, a Facebook group, newsletter, Instagram, Twitter, and a YouTube channel. We’re growing all the time, please join us.
OurBrainBank started in the US and our medical advisors include top neuro-oncologists, neurosurgeons, academics, and other experts in glioblastoma from Columbia University, Dana-Farber Cancer Institute, the NIH, Memorial Sloan Kettering, NYU Langone Health, Northwell Health, and more. We’ll add new advisors from the UK and in other countries where we launch. Full list of advisors.
OurBrainBank UK Board
Jana Bennett. Living with GBM
TV and radio producer and journalist
Founder of strategic advisory firm Coulson Partners
Writer & Editor, host of The Human and the Machine
Experienced communicator and CEO, co-founder, Cohere Partners
Our board includes passionate professionals from the worlds of media, healthcare, tech, strategy, business, and communications — some living with GBM, all touched by the disease.
11,725 new cases of brain tumours are diagnosed every year in the United Kingdom
GBM is the most common high grade cancerous primary brain tumour found in adults in the United Kingdom
Glioblastoma is the fastest growing form of brain tumour and extremely difficult to treat
5% of patients survive more than five years
“When I use the app, I’m managing the disease, not the other way around. I need better treatments now.”
— Jessica Morris, Founder of OurBrainBank
“We’re pleased to launch OurBrainBank in the UK. The app is simple and intuitive and I’m excited to be able to collect and analyse this important data.”
— Dr Florien Boele, Leeds Institute of Medical Research at St James’s
“The key to tackling GBM lies in research. This app could have a real impact on our ability to extend lives.”
— Fabio Iwamoto, MD, Deputy Head of Neuro-Oncology at Columbia University
Two strategic interrelated programmes:
OBB Explore: researchers use patient data & methodology.
OBB Engage: patient-centered advocacy
©OurBrainBank UK 2019. Registered Charity: 1184699. The OBB study is UK University Ethics approved. Principal Investigator: Dr Florien Boele, YCR Academic Fellow at the University of Leeds Institute of Medical Research and Leeds Institute of Health Sciences. OurBrainBank launched in the US in 2018.