In February, we surveyed people living with GBM and their caregivers about clinical trials and experimental treatments. Survey results.
The headlines make for frustrating reading.
We had 162 responses in just 36 hours—a very high and quick response rate. We found that:
- Less than a third (28.3%) were able to find a trial for which they were eligible.
- The majority of patients (57%) have not been offered a clinical trial.
- Even when patients asked their physicians about clinical trials, 80% of them were told to pursue standard treatment or directly discouraged from pursuing a clinical trial.
These statistics are so alarming because we know that clinical trials and experimental treatments are essential to saving lives now, as well as securing better treatments and longer survival in the future.
OurBrainBank is looking at how we can close this gap between patient need and demand, and trial and treatment supply. We are working closely with our medical advisers, led by Fabio Iwamoto MD, Deputy Director, Division of Neuro-Oncology, Columbia University. The clinical trial survey was designed by Daniel A. Orringer MD, Assistant Professor of Neurosurgery at the University of Michigan, together with the OurBrainBank team.
We are building a patient-powered movement with a mission to move glioblastoma from terminal to treatable. Every voice counts.
We’d love to get media attention for this, so if you have contacts or are a journalist yourself, please email us or feel free to forward our press release.
With warm wishes,
Living with GBM