OurBrainBank (OBB) movement builds momentum in mission to improve quality of life for glioblastoma patients and find new treatments
By Bruce Hellman
Chief Patient Officer and Co-founder of uMotif
OurBrainBank (OBB) movement builds momentum in mission to improve quality of life for glioblastoma patients and find new treatments that improve clinical outcomes
Honoring and advancing the vision of Jessica Morris, OBB Founder
Glioblastoma Multiforme (GBM) is the most invasive and lethal type of brain cancer. Less than 5% of patients survive for longer than 5 years from their diagnosis. While we’ve seen survival rates for many cancers improve significantly in recent years, overall GBM survival rates have remained nearly static for the last 30 years.
Jessica Morris, diagnosed with glioblastoma in January 2016 and succumbing to it on this day in 2021, set out to change this reality. Jessica, who built an impressive career as a communications strategist, worked closely with her neuro-oncologists in New York and Boston and technology experts to found OurBrainBank (OBB), a movement dedicated to helping people living with GBM and researchers seeking new and better treatments.
Today, the OBB movement continues to grow and gain momentum as it works to:
- Provide a home for those with GBM and their caregivers, families, and friends, where they can learn and feel empowered to have a say in their own care
- Advocate for new and better treatments for people with GBM, hoping to inspire real change. OBB seeks to expand access to the latest experimental treatments for everyone, not just those who live near a medical center of excellence or who can afford it
- Find new ways to harness data from patients and caregivers and use it to drive new research and give them more power in their own GBM journeys
We, at uMotif are honored to have known and collaborated with Jessica in her quest to improve clinical outcomes and extend the lives of those with GBM—making it a treatable and not a terminal diagnosis. Her commitment to and passion for advancing treatment and support for all who experience GBM continues to have a lasting impact on so many lives.
We are humbled to have worked with Jessica to expand patient-reported symptom tracking data to give patients more control of their treatment and provide more data to researchers.
Patients with GBM face a hugely challenging treatment regime, often with a highly complex set of medications, clinic visits, and diagnostics to manage. Patients can find it difficult to recall their symptoms and progress, particularly with the cognitive impacts of GBM.
Individualized, real-time symptom tracking offers a potential solution to the limitations of sporadic, patient self-reporting in the doctor’s office. Driven by her own experience, Jessica wanted an easy-to-use tool that would empower GBM patients to own and track their own symptom data over time and export reports to show to their medical teams. The patient community also wanted a way to provide more real-world data to researchers to support the development of new treatments.
Jessica worked with uMotif and researchers at Columbia University and the Dana Farber Cancer Center to create the OBB research initiative and define the datasets of most value to both patients and researchers. Shaped by input from the GBM community, patients use the uMotif eCOA/ePRO platform to report common symptoms – including sleep quality, exercise, mood, and fatigue – and capture quality of life data. Patients can also view their own data and export it to their clinician, as well as complete in-app physical responsiveness and pattern recognition tests.
As we honor Jessica’s work and commitment, we invite you to learn more about OBB and how you can help to advance her dream of improving clinical outcomes and extending the lives of GBM patients.
Visit the OBB website to learn more and donate: OurBrainBank
Learn more about how uMotif is supporting OBB’s patient-led, real-world research initiative with our eCOA/ePRO platform: OurBrainBank Case Study