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OurDataBank
Patient-powered evidence for better glioblastoma care.
See what 525 patients and care partners told us about gaps in information, treatment options, testing, clinical trials, and support.
Explore the findings
National survey · N=525
Selected findings from the national survey
These findings—presented at major oncology conferences—are only part of the story.
66%
Never offered a clinical trial
54%
No second-opinion discussion
69%
No information about tissue storage
34%
Not informed tumor testing occurred
40%
No discussion of TTFields or Optune
Explore the national survey
GBM Disparities: National Survey Findings
A visual overview of clinical trials, molecular testing, second opinions, tissue storage, TTFields, financial burden, and more.
View the presentation
Why OurDataBank matters
Turn lived experience into evidence.
Identify where patients miss essential diagnostics and treatment options.
Show how education, insurance, geography, finances, and treatment setting are associated with care.
Equip advocates, researchers, clinicians, journalists, and policymakers to drive change.
Published & presented research
2026 featured findings
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 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.
Read abstract →
ASCO 2026 · Publication only
Communication of Tumor Testing, Tissue Storage, and Molecular Findings in Glioblastoma
Only 66.5% reported knowing that tumor testing had occurred.
Among those who knew testing occurred, 22.9% said the findings were never explained.
Communication gaps were more common outside NCI-designated centers and were not explained by cognitive recall risk.
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2025
ASCO 2025
Disparities in Glioblastoma Care: Insights From a Nationwide Survey
Lower education was 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 persisted after controlling for age, race, gender, geography, and insurance type.
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SNO 2025 · Award-winning oral
Disparities in Glioblastoma Care: Access to Trials, Testing, and Informed Decision-Making
Patients at NCI-designated centers, younger patients, and those with higher education were more likely to be offered trials.
Testing and tissue-storage information 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.
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SNO 2025 · Rapid oral
Disparities in Tumor Treating Fields Awareness, Access, and Patient Experience
Younger patients were more likely to be offered TTFields.
Patients at NCI-designated centers and male patients were more likely to receive TTFields as first-line treatment.
Greater loneliness was associated with more TTFields-related challenges and lower satisfaction with oncologist care.
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2024
SNO 2024 · Poster
GBM Patients Continue to Face Barriers to Personalized and Comprehensive Care
69% were informed about tumor testing, yet 64% had no molecular testing beyond initial diagnostics.
65% were not informed about tissue storage; 79% reported no storage for potential treatment or trial use.
52% had no second-opinion discussion; 64% were not offered trial enrollment.
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SNO 2024 · Poster
GBM Patients Face Tumor Treating Fields Access and Information Inequity
40% reported no discussion of TTFields as a treatment option.
Of those offered TTFields, 29% faced access barriers, often related to insurance or cost.
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AONN+ 2024 · Poster
GBM Patients Across the United States Face Barriers and Information Gaps in GBM Care
65% were not informed about tissue storage; 79% reported no storage for future use.
40% had no TTFields discussion; 29% encountered insurance or financial barriers.
More than half were not offered a second opinion or clinical trial enrollment.
Read abstract →
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Approved de-identified findings
Availability depends on publication status, privacy requirements, and intended use.
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