OurBrainBank is working with world-class GBM doctors and data scientists to explore new ways to gather and research data reported by patients and caregivers ourselves. We see this as a way to accelerate the search for new treatments, and to help people on the GBM journey to improve their quality of life.
OurBrainBank is working with world-class GBM doctors and data scientists to explore new ways to gather and research data reported by patients and caregivers ourselves. We see this as a way to accelerate the search for new treatments, and to help people on the GBM journey to improve their quality of life.
So far, research around GBM has largely been confined to clinical trials — limited in number and often difficult to get onto. Advances in science and technology are opening up a whole new world of health data. We want GBM patients and caregivers to be part of that new frontier, driving change through their own reported data.
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.
OurBrainBank is excited to be working with Harvard scientists on a project that will effortlessly generate valuable data directly from volunteers. We’re proud to partner with neuro-oncologists at the Dana-Farber Cancer Institute and data scientists at the Onnela Lab at the Harvard T.H. Chan School of Public Health.
DANO-GBM (Digital Assessment Neuro-Oncolgy) uses “passive data” — that is, data automatically generated on smart phones. We’re constantly generating data waiting to be captured and studied — eg number of calls or texts, physical mobility, or sleep patterns. This data can indicate how mobile we are, how connected we are to friends and family or, conversely, how isolated we are. Ultimately, our vision is to potentially help patients and doctors predict tumor recurrence prior to physical symptoms or the next MRI.
People with GBM are often left out of discussions about their own health journey. Our goal is that the GBM patient voice is incorporated into every clinical trial, all aspects of research, and all stages of treatment development.
OUR DATA MISSION
OurBrainBank, in collaboration with a team from Imperial College London, is conducting innovative research to better understand the experience of adult brain tumour patients from the UK, some of whom may be accessing treatment outside of the standard care that is offered by the NHS.
MAY is Brain Tumor Awareness Month: give, share, raise awareness about glioblastoma
Join us on June 5, 2025 in Brooklyn to celebrate Jessica Morris’s memoir of living with glioblastoma ALL IN MY HEAD. Readings and conversation with a GBM care partner and a top neuro-oncologist from Columbia University.
Read the letter conductor Michael Tilson Thomas posted. He’s has been open about his glioblastoma diagnosis with his many fans around the world.
OurBrainBank, in collaboration with a team from Imperial College London, is conducting innovative research to better understand the experience of adult brain tumour patients from the UK, some of whom may be accessing treatment outside of the standard care that is offered by the NHS.
MAY is Brain Tumor Awareness Month: give, share, raise awareness about glioblastoma
Join us on June 5, 2025 in Brooklyn to celebrate Jessica Morris’s memoir of living with glioblastoma ALL IN MY HEAD. Readings and conversation with a GBM care partner and a top neuro-oncologist from Columbia University.
Read the letter conductor Michael Tilson Thomas posted. He’s has been open about his glioblastoma diagnosis with his many fans around the world.
