SURVEYS AND DATA COLLECTION
We also collect data through surveys that allow people in the GBM community to share their experiences. The published results help raise awareness, empower people to demand the best care possible, and (we hope) encourage overall change in how GBM is seen and treated.
2024: Survey on Disparities in GBM Treatment in the USA
2022-23: Personalized Care Survey
2019: Patient Action Charter Survey (basis of our GBM Bill of Rights)
2019: Clinical Trials Survey
Academic Journal Articles, Oncology Conference Posters and Papers, and Publications
“GBM patients continue to face barriers to personalized and comprehensive care that may impact longevity and quality of life” Poster presented at SNO2024, Houston
“GBM patients face TTF access and information inequity that may impact patient outcomes and quality of life” Poster presented at SNO, 2024, Houston
“GBM Patients Across the United States Face Barriers and Information Gaps in GBM Care That May Impact Longevity and Quality of Life” Poster presented at AONN+ 2024, Las Vegas
“Unmet Needs: What People Living with Glioblastoma Lack Today, Including Access to Critical Genomic Tumor Testing” Poster presented at SNO2023, Vancouver
“Access to critical genomic tumor testing for glioblastoma (GBM) patients” Poster presented at SNO/ASCO San Francisco, 2023
“Pilot study of smartphone-based health outcome tracking (OurBrainBank) for glioblastoma patients” Journal of Neuro-Oncology Practice, July 2021
AONN+ conference: OurBrainBank won the Outstanding Poster Award in the category of “Patient Advocacy and Patient Awareness” from the Academy of Oncology Nurse & Patient Navigators, November, 2020
“Study of a smartphone-based symptom assessment (OurBrainBank) for subjects with glioblastomas” American Society of Clinical Oncology 2019 annual meeting (ASCO19).
“Pilot of a smartphone-based symptom assessment (OurBrainBank) for subjects with glioblastoma” (Abstract) Society for Neuro-Oncology (SNO 2018)
“The Potential of Patient Power: Progress Report,” OurBrainBank, 2019
PILOT STUDY
In 2018, we launched a pilot study using a free smartphone app that enabled patients or caregivers to track health indicators (such as sleep quality and mood), share data with clinicians, and contribute to research. Around 700 people living with GBM (and their caregivers) in the US and UK participated. The results were positive and showed that the data generated could be helpful for both patients and their clinicians.
We learned a great deal from our pilot study and are now evolving and building on our experience. Along with the data, we recorded feedback and recommendations from people living with GBM, their care partners, doctors, and researchers. Our results were published in major academic journals and presented at oncology conferences.