OurBrainBank’s Patient-Led Glioblastoma Research Initiative Captures 150,000+ Data Points with uMotif eCOA Platform
Study Summary
OurBrainBank (OBB), a patient-led movement founded by Jessica Morris, partnered with uMotif, Columbia University, and the Dana-Farber Cancer Institute to build a real-time symptom-tracking initiative for people living with glioblastoma (GBM). Using the uMotif eCOA platform, patients and caregivers tracked symptoms, completed validated quality-of-life questionnaires, and shared their data with clinicians and researchers — creating a scalable foundation for future GBM research.
At-a-glance metrics
- 630 patients participated in the initial study, with the community growing to over 1,000
- 150,000+ data points captured
- Majority of patients found symptom tracking useful in managing their GBM treatment
Situation: Patients leading research to advance treatments for GBM
GBM is the most invasive and lethal type of brain cancer. Only about 5% of patients overall survive for longer than five years from their diagnosis. While survival rates for many cancers have improved significantly in recent years, overall GBM survival rates have improved only modestly.
Given the lack of progress through traditional methods, it’s critical to explore new approaches — including expanding patient-reported symptom tracking data, and how this is used by doctors and patients alike.
Patients are increasingly demanding enhanced solutions to put them in control of their treatment and provide more data to researchers. This desire among patients to do more was the impetus for Jessica Morris to create OBB, an innovative, patient-led movement designed to move GBM from terminal to treatable.
Challenge: Capturing more accurate, timely, and extensive symptom reporting using an eCOA platform
Challenge: Capturing more accurate, timely, and extensive symptom reporting using an eCOA platformPatients with GBM face a rigorous 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 given 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, the OBB founder 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 data to researchers — to help OBB’s aim to turn GBM from terminal to treatable, powered by research.
What the eCOA platform needed to deliver
- Enable patients to track their own symptom data over time, despite the cognitive impacts of GBM
- Equip patients to export reports to share with their medical teams
- Give researchers a steady, patient-contributed source of real-world data
Solution: uMotif’s configurable eCOA platform is designed around patients
Solution: uMotif’s configurable eCOA platform is designed around patientsThe founder of OBB worked with uMotif and researchers at Columbia University and the Dana-Farber Cancer Institute to create the patient-led initiative, shape the initial research study, and define the datasets of greatest value to both patients and researchers.
The team selected the highly configurable uMotif eCOA platform as the foundation for the pioneering research initiative — empowering patients and caregivers to effectively track symptoms, share data with clinicians, and donate data to medical research.
Why uMotif
- Easy for patients and caregivers to use
- Configurable to track the symptoms and quality-of-life measures most relevant to patients
- Support for real-time, patient-owned data that participants could export and share
How it worked: Everyday symptom tracking, built around patients
How it worked: Everyday symptom tracking, built around patientsShaped by input from the GBM community, patients used the uMotif app to report common symptoms — including sleep quality, exercise, mood, and fatigue — and capture quality-of-life ePRO instruments (EORTC, EQ-5D-5L).
The application also included an information tab that allowed users to view their own data and export it to their clinician, as well as in-app physical responsiveness and pattern recognition tests. To boost engagement, weekly mobile notifications reminded patients to track their symptoms.
Data and assessments collected
- Sleep quality
- Exercise
- Mood
- Fatigue
- Quality-of-life ePRO instruments (EORTC, EQ-5D-5L)
- In-app physical responsiveness tests
- In-app pattern recognition tests
Results and Impact: A scalable eCOA solution for patient-powered GBM research
Results and Impact: A scalable eCOA solution for patient-powered GBM researchOBB shows how giving patients ownership of their own real-time data can keep them engaged in symptom tracking even amid a highly complex treatment regimen and the cognitive challenges of GBM — while building a shared dataset that supports both individual care conversations and long-term research.
Key results
- 630 patients participated in the initial study, with the community growing to over 1,000
- 150,000+ data points captured
- Majority of patients reported found symptom tracking useful in managing their GBM treatment
- Created a viable and scalable foundation for future research and discovery
- Engaged and empowered patients in their own GBM treatment
Lessons Learned: What the results mean for researchers
Patient-led initiatives can succeed where traditional research models have stalled. By putting patients at the center of platform design — and giving them ownership over their own data — study sponsors can build a highly engaged community willing to contribute data consistently, even while managing a complex and cognitively demanding disease. The result is a scalable model for turning patient experience into research-ready data.
FAQs
What is OBB?
A patient-led movement founded by Jessica Morris, designed to move GBM from a terminal to a treatable condition by expanding patient-reported symptom data and how it’s used by doctors and researchers.
How did patients use uMotif’s platform?
Patients and caregivers used the uMotif app to track symptoms such as sleep quality, exercise, mood, and fatigue, complete validated quality-of-life questionnaires, view and export their own data to clinicians, and complete in-app cognitive and physical response tests.
What data was collected?
Patient-reported symptom data, quality-of-life ePRO instruments (EORTC, EQ-5D-5L), and in-app physical responsiveness and pattern recognition test results.
Explore Related uMotif Resources
- The Benefits of eCOA — why electronic clinical outcome assessment improves data quality and compliance.
- eCOA Solutions — an overview of uMotif’s configurable eCOA platform.
- Decentralizing Clinical Trials — how sponsors can move data capture out of the clinic without compromising quality.
- More uMotif Case Studies — see how the platform performs across other therapeutic areas.
Next Steps
Find out more about how uMotif can help drive unparalleled patient engagement and data capture in your next study.
Key Terms Explained
A few specialist terms used throughout this case study, defined for readers new to clinical trial technology:
eCOA: Electronic Clinical Outcome Assessment — any clinical outcome data (symptoms, function, quality of life) captured electronically instead of on paper.
ePRO: Electronic Patient-Reported Outcome — a type of eCOA completed directly by the patient, typically via an app or web form, rather than a clinician.
EORTC: A validated, cancer-specific quality-of-life questionnaire developed by the European Organisation for Research and Treatment of Cancer.
EQ-5D-5L: A standardized, five-level quality-of-life questionnaire used across a wide range of health conditions.
Patient-led research: Research initiated, shaped, and driven by patients themselves, often in partnership with clinicians and academic institutions.