What is OurBrainBank?
OurBrainBank is a nonprofit dedicated to moving glioblastoma from terminal to treatable, powered by patients. Our key tool is the OurBrainBank app which helps people manage their disease as well as provide much-needed data for medical researchers.
GBM patient must be 18+ years old and in the United States or UK (we hope to expand further soon).
The app, designed by uMotif, underwent a rigorous process in order to protect patient confidentiality. It’s been used for studies related to Parkinson’s, arthritis, and other conditions.
We encourage you to use the app daily — as many times as you like — for an initial 100 days. 100 days gives us enough data to produce meaningful results. After that, we encourage you to continue to track symptoms for 1000 days and beyond.
OurBrainBank-approved researchers will examine the aggregated data to deepen understanding of the disease, help drive new trials, and develop insights into the experiences of people living with GBM.
As you progress, you may view your data at any time: access reports via the menu icon (bars at the top left of the app screen) and select “my reports.” Compare different symptoms and view your progress over time.
You may share your data with other people, including your healthcare team, so they can see how your symptoms may have changed. This may help you understand the relationship between your treatments and your symptoms.
The app allows you to self-track neurological function with games that test balance, ability to compare numbers, and speed of neurological function. They’re quite addictive!
The app can be used to track health data such as your weight, blood pressure, or blood sugar. There’s also a neat journal feature, so you can record how you’re doing.
We plan to publish our findings widely, sharing the insights gleaned from the aggregated data, and driving more research to crack glioblastoma.
We encourage you to continue to participate after your first 100 days. Your input is crucial to the success of the mission — to turn GBM from terminal to treatable
What are the potential benefits of taking part in the study?
For people living with GBM and their caregivers, the app enables you to better understand disease symptoms over time. For example, many people taking chemotherapy find fatigue is associated with the medication cycle, so tracking this helps patients plan their activities.
What will happen to my data?
Everyone using the app will be asked to consent and allow their data to be used anonymously. The aggregated patient data will be analyzed by Columbia University in New York, and the Dana-Farber Cancer Institute in Boston. Their teams of world-class researchers will examine the data to spot insights and deepen and speed up understanding of GBM. Because we want to fast-track GBM research, the data will be freely available to any qualified GBM researcher worldwide.
Is it free?
There is no cost to participate in the study (other than to your mobile data plan if applicable).
What personal information will be used or disclosed?
Your name will not be available to researchers. It will be removed from study databases for analysis.
Your personal health information that may be used or disclosed in connection with this research study, will include, but is not limited to your height, weight, gender, age, ethnicity/race, health history, and answers to study questions that you choose to answer.
Who may use and disclose my data?
The study investigators, coordinators, and staff may use and share your de-identified personal information (ie your identity will not be disclosed) to do the research described (or as required by law).
We will not disclose your identity in any reports about this study such as scientific publications or presentations.
A copy of the data you collect will be sent to a database for research, but data that identifies you will be removed. Anyone wanting to use the anonymized data must be approved by OurBrainBank.
How will you maintain confidentiality?
We are committed to protecting your privacy. The app has been designed to prevent disclosure of your identity and to maintain confidentiality. Except as required by law, you will not be identified by name or by any other direct personal identifier.
To protect your privacy we will use a random code number instead of your name on all data collected, analyzed, aggregated and released to researchers. Information about the code will be kept in a secure system. Researchers will have access to the data collected, but will be unable to map any particular data to theparticipants’ identities.
Your de-identified data will be placed in a secure online database — where approved researchers can access it. It could then be included in large, computational studies related to general health and wellness. Study results may be presented at scientific or medical meetings or published in scientific journals. In all these scenarios, your identity will not be disclosed. As with any online database there is a risk that our database can be breached by hackers. However, our partners uMotif’s technology is such that this is very unlikely.
Use and disclosure of information for research purposes
Information about you and your health is personal and private and cannot be used in a research study without your permission (opt-in). This is why we provide an e-consent form as part of signing up to the OurBrainBank App. If you agree to participate in the project, you will provide that permission. But if you do not, you will not be able to participate in this research study.
Please note that researchers will not have access to your identifiable data. They will only be able to use a research dataset where your name and other identifiable information has been removed, ie de-identified data. REC number for the UK is MREC 18-108.
Who do I contact if I have any technical issues while using the app?
If you have questions or need help, please contact email@example.com
Who are key partners on the project?
OurBrainBank has been created by people living with glioblastoma. Our founder is Jessica Morris, who was diagnosed in January 2016. She built OurBrainBank with her doctor, Fabio Iwamoto MD, Columbia University; Lakshmi Nayak MD, Dana-Farber Cancer Institute, and Bruce Hellman, CEO of uMotif, who designed the OurBrainBank app.
OurBrankBank is a nonprofit charity organization, with an active board chaired by founder Jessica Morris. Read her story.
Where does OurBrainBank operate?
OurBrainBank is active in the US and UK, we plan to expand further as we raise funds.
How else may I be involved?
Like us on Facebook, join our Facebook Group, or follow us on Twitter and Instagram to exchange ideas, symptoms, and support. Participate in video chats, read our newsletter, watch our YouTube channel with helpful “how to” videos.
Who is funding the research?
OurBrainBank is a nonprofit charity, funded by individuals, companies, and philanthropies. We welcome donations.
Can someone with a low-grade glioma or other brain tumor join this study?
We’re sorry, but only patients with a diagnosis of glioblastoma who are age 18+ and in the US or UK can join at this point.
Can I withdraw from the project?
Your participation in this study is voluntary. You may stop using the app and leave the study at any time. Neither will result in any penalty.
What will happen if I withdraw from the study?
If you withdraw from the study, we will stop collecting new data (and delete your study data from the research servers), but some copies of your data that have already been distributed to researchers will not be able to be destroyed or deleted.
The Project coordinators or the sponsor may also withdraw you from the study without your consent at any time for any reason if you do not consent to continue in the study after being told of changes in the research, or if the study is cancelled.
What happens if I go overseas? Can I still take part without using roaming?
You can still record your symptoms on the app while you are abroad and it will be uploaded when a data connection becomes available — we recommend either you connect to WiFi, enable data roaming on your phone, or return to the US. Please note that enabling data roaming while abroad can lead to high costs, so check your mobile phone plan.
How long do I need to enter data for?
As a first step, we ask you to record your symptoms for 100 days, then continue to 1000 days if you can.
What should I do if I want to stop participating?
If you want to withdraw from participation please contact us at firstname.lastname@example.org
How do I uninstall the app?
To uninstall the app, please follow the standard process described at the Apple App Store or Google Play Store
How to donate?
Visit our gifts page