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

FEATURED 2026 FINDINGS

BEING TOLD IS NOT THE SAME AS BEING UNDERSTOOD

• Among respondents who knew tumor testing had occurred, 22.9% reported that the tumor type or molecular findings were never explained.
• Communication gaps were more common outside NCI-designated cancer centers and were not explained by cognitive recall risk.

Read ASCO Abstract

LONELINESS IS PART OF THE GBM BURDEN

• More than half of respondents met criteria for loneliness. Care partners reported greater loneliness than patients, while financial hardship and racial inequities intensified the burden.
• These findings show that the effects of glioblastoma extend far beyond the tumor—and that care partners need care, too.

Read ASCO Abstract

Key Findings

From our nationwide survey (n=525): Survey on Disparities in GBM Treatment in the USA

• 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

Published & Presented Research

ASCO 2026 – Poster Presentation
Assessing Loneliness in Glioblastoma Patients and Caregivers Using a Nationwide Survey

• More than half of respondents met criteria for loneliness
• Care partners reported substantially greater loneliness than patients: 57.4% compared with 33.9%
• Financial hardship and racial inequities intensified the burden; non-white respondents had fourfold higher odds of loneliness

Abstract

ASCO 2026 – Publication Only
Communication of Tumor Testing, Tissue Storage, and Molecular Findings in Glioblastoma: Insights From a National Follow-Up Survey

• Only 66.5% reported knowing that tumor testing had occurred
• Among those who knew testing occurred, 22.9% said the tumor type or molecular findings were never explained
• Communication gaps were more common outside NCI-designated cancer centers and were not explained by cognitive recall risk

Abstract

SNO 2025 — Health Disparities & Quality Improvement Award
Disparities in Glioblastoma Care: A National Survey on Access to Trials, Testing, and Informed Decision-Making

• Patients treated at NCI-designated centers, younger patients, and those with higher education were more likely to be offered clinical trials
• Access to tumor testing and information about tissue storage varied by treatment setting, education, age, insurance, geography, and distance from care
• Second-opinion discussions were more common among privately insured and college-educated respondents

Abstract

SNO 2025 – Rapid Oral Presentation
Disparities in Tumor Treating Fields (TTFields) Awareness, Access, and Patient Experience: Findings from a National GBM Survey

• Younger patients were more likely to be offered TTFields
• Patients treated at NCI-designated centers and male patients were more likely to receive TTFields as part of first-line treatment
• Greater loneliness was associated with more TTFields-related challenges and lower satisfaction with oncologist care

Abstract

ASCO 2025 – Poster Presentation
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

SNO 2024 – Poster Presentation
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

SNO 2024 – Poster Presentation
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

AONN+ 2024 – Poster Presentation
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 access

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

Publicly shared findings are aggregated and de-identified. OurBrainBank does not publish personally identifiable health information.

Contact: info@ourbrainbank.org | 909-274-9486