Academic Journal Articles, Oncology Conference Posters and Papers, and Publications

“Unmet Needs: What People Living with Glioblastoma Lack Today, Including Access to Critical Genomic Tumor Testing” Poster presented at SNO Vancouver, 2023

“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

Surveys

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  

In 2024, we embarked on a large national research project to identify health disparities in identifying and treating GBM across the United States. We’ll use this data to demand better and equal treatment for every patient.