Closing the Gap in Glioblastoma Care

OurDataBank™ is an advocacy-driven platform from OurBrainBank, created to make disparities in glioblastoma (GBM) care visible — and impossible to ignore. Built from the voices of more than 500 patients, caregivers, and families, our aggregated, de-identified survey data reveals inequities in diagnosis, treatment access, clinical trial offers, and insurance coverage across the United States.

These insights have been featured at leading cancer conferences, including SNO, AONN+, and ASCO, sparking critical conversations about how to improve care for every GBM patient.

Why OurDataBank™ Matters

• Identifies where patients miss essential diagnostics (mutation testing, tissue storage) and advanced options (clinical trials, TTF)
• Highlights how education, insurance, and geography influence care
• Equips advocates, researchers, journalists, and policymakers with evidence to drive change

Key Findings 
From our nationwide survey (n=525):

• 54% never discussed a second opinion with their doctor
• 34% were not informed about tumor testing; 36% did not receive mutational testing
• 66% were never offered a clinical trial
• 69% were not informed about storing tumor tissue for future use

These findings — presented at major oncology conferences — are only part of the story. Full posters and detailed analyses are available upon request. Request access

Conference Posters & Abstracts

ASCO 2025 — Chicago
Disparities in Glioblastoma Care: Insights from a Nationwide Survey

• Lower education linked to reduced access to tissue storage, MGMT/IDH testing, clinical trial offers, and second opinion discussions
• Education and financial hardship correlated with lower satisfaction with care
• Effects persist after controlling for age, race, gender, geography, and insurance type

Abstract | Request full poster via access form

SNO 2024 — Houston
GBM Patients Continue to Face Barriers to Personalized and Comprehensive Care

• 69% informed about tumor testing, yet 64% had no molecular testing beyond initial diagnostics
• 65% not informed about tissue storage; 79% reported no storage for potential treatment/trial use
• 52% had no second opinion discussion; 64% were not offered trial enrollment

Abstract | Request full poster via access form

SNO 2024 — Houston

GBM Patients Face Tumor Treating Fields (TTF) Access and Information Inequity

• 40% reported no discussion of TTF as an option
• Of those offered TTF, 29% faced access barriers — often insurance or cost related

Abstract | Request full poster via access form

AONN+ 2024 — Las Vegas
GBM Patients Across the United States Face Barriers and Information Gaps in GBM Care

• 65% not informed about tissue storage; 79% reported no storage for future use
• 40% had no TTF discussion; 29% encountered insurance/financial barriers to TTF access
• More than half were not offered a second opinion or clinical trial enrollment.

Abstract | Request full poster via access form

(Coming soon) SNO 2025 — Hawaii — Accepted abstract

What you’ll find with approved access:

• Full-resolution poster PDFs from ASCO, SNO, and AONN+
• Extended HIPAA-compliant dataset summaries and charts
• Select de-identified quotes illustrating patient and caregiver experiences

Privacy & HIPAA
OurDataBank™ shares only aggregated, de-identified findings. No personal health information is collected or shared.

Contact: info@ourbrainbank.org | 909-274-9486
Hashtags: #OurDataBank #GBMDisparities #GBMRights