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OURBRAINBANK: PEOPLE-POWERED, TECH-ENABLED START-UP TO TACKLE BRAIN CANCER

Al's Comment:

 This is from our friends at "OurB Brain Bank".  It is an app that records your information to be used in research and helps match you with clinical trials.   We have similar projects going - the brain tumor virtual trial, and our clinical trials matcher, but it is good to get other points of view


Posted on: 03/13/2018

OURBRAINBANK: PEOPLE-POWERED, TECH-ENABLED START-UP TO TACKLE BRAIN CANCER
 
 
The OurBrainBank App launches today - an innovative and ambitious new approach to tackling one of the most aggressive, complex and deadly forms of cancer – Glioblastoma (GBM).  OurBrainBank is a non-profit created by, with and for patients with GBM. The App is a key tool for people living with GBM, enabling them to better manage their disease by tracking symptoms and activities relating to quality of life, and self-testing neurological abilities through smart digital games. At the same time, patients can enjoy knowing their personal data is helping to fast-track new treatments and approaches to move GBM from terminal to treatable.
 
OurBrainBank is inviting people with Glioblastoma and their caregivers to contribute to an initial ‘100 days’ study. OurBrainBank will publish the findings, refine the symptoms being monitored via the App and launch a new study to fit patients’ needs. 
 
The App is made by uMotif, and has been proven to work through large-scale patient studies and Randomized Controlled Trials in 21 clinical conditions. The content of the App reflects the findings from OurBrainBank’s research amongst 115 people with Glioblastoma. The App is beautifully designed and easy to use for patients to track their symptoms and other data to help patients and researchers to gain new insights.  The uMotif technology ensures patients’ privacy and has been robustly tested by over 20,000 patients with conditions ranging from Arthritis to Parkinson’s. 
 
All data collected will be de-identified and made available to any qualified GBM researcher worldwide, subject to the approval of OurBrainBank's Data Access Committee, ensuring that participants’ privacy is maintained.
 
OurBrainBank’s study has been accredited by the New England Institutional Research Board (IRB). Principal Investigator Kelli Duprey commented: “We have taken time to make sure what we’re doing will be helpful to both patients and medical researchers. We are honored to have two world-class neuro-oncologists, Dr Fabio Iwamoto from Columbia University and Dr Lakshmi Nayak from Dana-Farber Cancer Institute to advise us, ensuring we analyze the data we collect to best effect.”
 
To take part, participants can download the OurBrainBank App from the App Store or Google Play, and register using the code OBB100. They can also register by visiting www.OurBrainBank.com.   
 
OurBrainBank expects to have over 1,000 people using the App within one year. This has big implications for all those interested in tackling cancer:
 
    Self-tracking technology has the potential to impact as significantly as a blockbuster new drug
 
A paper published in JAMA and presented at the 2017 ASCO conference shows that patients who self-track their health and use this data with their healthcare professionals have better outcomes and longer survival than the usual standard of care. (See below ++)
 
    Massively speeding up trial recruitment
 
The current system of recruitment takes years and costs tens of thousands of $$. Trial recruiters can come to OurBrainBank who can message potential recruits at the click of a mouse, massively speeding up and cutting costs of trial recruitment, and thereby helping the whole process of bringing new treatments to market
 
    Enhancing the value of patients’ experiences in new and existing treatments
 
Increasingly, medical researchers are acknowledging the value of understanding patients’ experiences. Patient Reported Outcomes (PROs) are throwing new light on the impact of diseases. OurBrainBank’s medical advisers plan to announce the first PRO in glioblastoma as the app gains users.
 
    Digital healthcare and patient-centered approaches
 
OurBrainBank is born out of understanding the macro trends impacting on healthcare worldwide, particularly digital disruption and the opportunity smartphones allow for patients to play a more active, informed role in managing their disease. 
 
OurBrainBank was founded by Jessica Morris, a veteran strategist diagnosed with GBM in January 2016. OurBrainBank’s advocacy efforts are being led by Adam Hayden, diagnosed with GBM in May 2016.  A wide range of patients and medical advisory board input to the organization’s plans, ensuring it stays patient focused and clinically relevant.
 
Jessica Morris, founder and Chair of OurBrainBank, commented: “People with Glioblastoma and their care-givers are all over social media - wanting to connect, compare experiences and treatments. OurBrainBank taps into this digital reality. Our approach has been designed with, by and for patients. Our medical advisors are amongst our most ardent supporters. Together, we can move this disease from terminal to treatable - powered by patients.”
 
Fabio Iwamoto MD, Deputy Head of Neuro-Oncology at Columbia University, said: “OurBrainBank will collect data that is vital to researchers seeking to turn this disease around. The key to tackling this disease lies in research, and for too long we’ve lacked the critical insight from patients. The OurBrainBank App closes that gap, and I’m excited at the implications. This has the potential to have a real impact on our ability to extend lives.” 
 
Adam Hayden, board member, diagnosed with GBM in June 2016, said:  “OurBrainBank uplifts the person living with Glioblastoma as the pivot point for transforming our disease experience by prizing our patient reported outcome data as a unique and novel contribution to oncology research that cannot be replicated in the lab without patients’ direct involvement. Persons with GBM are as heterogeneous as our diseases. OurBrainBank is more than an App; it is the means by which we uncover meaningful patterns to inform research from diverse data points that would otherwise go unanalyzed.”
 
Bruce Hellman, Chief Executive of uMotif said: “Clinical research is increasingly being centred around patients - with studies designed around the people that really matter; patients.  We’re incredibly excited to support OurBrainBank with our technology for e-consent and data capture as it’s the first of a new kind of research - large-scale, ambitious and impactful digital programs driven by and for patients.  By taking a ‘patient-centric’ approach, the speed for researchers to find new insights will dramatically increase.”
 
Asaf Danziger, Novocure’s Chief Executive Officer commented, “We are proud to help support OurBrainBank as we are closely aligned with its mission to serve the glioblastoma community. The patient voice is a powerful one and enabling the tools to help amplify that voice is to the benefit of the community as a whole. Patients and their caregivers can play an active and important role in their treatment and should feel empowered to do so.”
 
 
 
For further information, please contact: 
 
Lauren Alexander
 
Laurensierraalexander@gmail.com
 
www.OurBrainBank.com
OurBrainBank, Inc. is a charitable organization tax-exempt under Internal Revenue Code Section 501(c)(3) and not a private foundation under Code Section 509(a).  
 
++
 
https://jamanetwork.com/journals/jama/fullarticle/2630810
 
 
 

 


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