FAQ

What is 'OurBrainBank'?

OurBrainBank is a completely new approach to cracking cancer. We focus on one of the most complex and aggressive forms of cancer - Glioblastoma - because we believe that overcoming one of the toughest cancers offers the most speedy and cost effective way of cracking all cancers.

OurBrainBank is designed with and for 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 in overcoming glioblastoma and all cancers. Our key tool is the OurBrainBank App which is designed to help people manage their disease as well as provide much-needed data for medical researchers, so together we can beat this disease.

What will I need to do if I want to use the App?

You can download the OurBrainBank app from the Google Play store or the Apple App store. Full instructions can be found on the OurBrainBank website www.ourbrainbank.com.

The App has been through a rigorous process designed to protect patient confidentiality and prevent disclosure of your identity. It has been used in user studies for people with Parkinson's www.100forparkinsons.com, and Arthritis www.cloudywithachanceofpain.com. It was designed by uMotif www.umotif.com who have worked very closely with us in creating the OurBrainBank app.

We encourage you to use the App daily – as many times as you want each day – for an initial study period of 100 days. We've chosen 100 days because this gives us sufficient data to produce meaningful results. After that, the OurBrainBank team of medical researches will examine all the aggregated data from everyone using the App, so we can deepen understanding of the disease, help drive new trials, and develop new insights into the quality of life and experiences of people living with GBM.

As you progress through the initial 100 days, you can view your data at any time by accessing reports via the menu icon in the top left-hand corner of the screen and selecting 'my reports'. Here you can compare different symptoms and view your progress over time.

You can choose to show your data to other people, including your healthcare team, so they can see how your symptoms as you have reported, have changed over time. This may help deepen you and your clinician's shared understanding of the relationship between your treatments and your symptoms.

The App allows you to self-track your neurological functions, with smart games that test balance, ability to compare numbers, and speed of neurological function. They're quite addictive!

The App can be used to track other health data such as your weight, blood pressure or blood sugar data, if you regularly track these.

There's also a neat journal feature, so you keep a regular note of how you're doing.

The OurBrainBank website includes a blog and link to our Facebook page where you can interact with others using the App, exchanging ideas, symptoms, and support.

After the initial 100 day study, the OurBrainBank team will take stock and analyze the group data from everyone using the App. We plan to publish our findings widely, sharing the insights gleaned from the aggregated data, and driving more research to crack Glioblastoma.

Beyond the initial 100 days, your data will be used to power the on-going OurBrainBank machine. We STRONGLY encourage you to continue to participate after your first 100 days, as 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 'OurBrainBank' and interacting with the App?

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 that there is a pattern to the fatigue associated with the medication cycle. Tracking fatigue daily helps patients plan their activities as it helps alert them to when fatigue is likely to be most burdensome.

What will happen to my data?

Everyone using the App will be asked to consent to have their data 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.

What will it cost it me to take part in the 'Our Brain Bank' project?

There is no cost to you to participate in this 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 all 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 body 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, study coordinators and study staff may use and share your de identified personal information (in other words 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 research database for further research, but data that identifies you will be removed. Anyone wanting to use the anonymized data will have to be approved by OurBrainBank.

How will you maintain confidentiality?

We are committed to protecting your privacy and to this end the app has been designed to prevent disclosure of your identity and to maintain the confidentiality of users. 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 your data collected, analyzed, aggregated and released to researchers. Information about the code will be kept in a secure system. Researchers will have access to all the data collected in the study, but will be unable to easily map any particular data to the identities of the participants.

Your de-identified data will be placed in a 'repository' – a secure online database – where approved qualified researchers can access it. It could then be included in large, computational studies related to general health and wellness. The results of this research study 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 be able to access any of your identifiable data. They will only be able to use a research dataset where your name and other identifiable information has been removed - known as de-identified or anonymised data.

Who do I contact if I have any technical issues while using the App?

If you have any questions, please contact info@ourbrainbank.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 has 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 non profit organization, with an active board comprising Jessica Morris, Ceci Zak, Kelli Duprey, Adam Hayden, Claire Wright and Andi Phillips. You can find out about their backgrounds on the OurBrainBank website.

Where is OurBrainBank operating?

OurBrainBank launches in the US, and plans to expand internationally later this year.

Who is funding the research?

OurBrainBank is a non profit, funded by individuals, companies, and philanthropies. The website includes these. If you would like to donate, please do so via our donation page by clicking here.

Can I withdraw from the project?

Your participation in this study is voluntary. You may decide not to participate or you may leave the study at any time. Either of these decisions will not 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 qualified 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 aAp 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 and the charges if you want to do this.

How long do I need to enter data for?

As a first step, we invite you to record your symptoms for 100 days. We will then invite you to continue tracking your symptoms, and keep you abreast of how the community of people using the app is doing.

What should I do if I want to stop participating?

If you want to withdraw from participation please contact us at info@ourbrainbank.com

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?

Please donate via our YourCaring page by clicking here or go to the OurBrainBank website for the donation information.