If you have a glioblastoma diagnosis, a clinical trial could be your best hope.
NEWS October 2023
The first step is talking to your medical team to find out if you’re a good candidate. Some doctors may be resistant, so don’t be afraid to get a second opinion, especially if your hospital is not a major center for brain cancer.
Below are resources that can help. A good first step is contacting one of the non-profits that offer navigation services, they can walk you through the process.
Support, information, virtual tumor boards, second opinions
Brain Tumor Network
Phone or email consultation includes clinical trial matching. “BTN’s services are free for patients and healthcare providers; the information you receive from BTN will be personalized to tumor type, medical history, and personal needs.” USA
National Brain Tumor Society
“The NBTS Clinical Trial Finder is intended to help raise awareness and increase participation in clinical trials to facilitate brain tumor research and accelerate the development of new drugs and treatments for patients.” Other resources include financial assistance, support, help with transportation and legal issues, and more. USA
American Brain Tumor Association
“The ABTA is a steadfast advocate on behalf of the brain tumor community in the United States, and we are here to help patients, caregivers, and their loved ones as they navigate the brain tumor journey.” Guide to treatment centers. USA
Al Musella Foundation/Cancer Commons
“Xcelsior: a patient centric platform trial for precision oncology… a research study but with a huge twist: YOU make the final decision on which treatments to do. Our team of nurse navigators, research scientists, internal review board of domain experts and external virtual tumor board of top brain tumor doctors evaluates your case and suggests the best plan options for your individual case.” USA
“Cancer Commons provides compassionate support as we identify and help you access the best diagnostic and treatment options.” USA
End Brain Cancer
“We provide educational materials to make sure the patient is seen by a top specialist; what to demand from a neuro-surgeon, pathologist, radiologist and neuro-oncologist/Oncologist in order to be eligible for advanced treatments, clinical trials, DNA sequencing, genomic profiling, MGMT testing and protein testing… helps identify the best treatment options. Personalized Medicine based on tumor profile.” App to help navigate your GBM journey. USA
The National Cancer Institute offers services including, support, referrals, help finding a clinical trial, and free consultations (second opinion) at Johns Hopkins Hospital. USA
“We provide personalised support and build resources that help people with a brain tumour and their loved ones. We work with people in the clinical setting to secure the best possible care for people with a brain tumour and we campaign to solve real issues, because we understand what challenges people with a brain tumour face.” Treatment guide and list of experimental options. UK
The Brain Tumour Charity
“The Brain Tumour Charity is the world’s leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. Committed to saving and improving lives, we’re moving further, faster to help every single person affected by a brain tumour. We’re set on finding new treatments, offering the highest level of support and driving urgent change.” Their free app BRIAN can help you manage your GBM and contribute data to research. UK
Clinical Trials: information and matching services
“Leal Health is a patient-first digital health company with a mission to democratize access to advanced cancer treatment through clinical trials. Leal Health uses artificial intelligence to empower patients to own their cancer journey and analyzes its global patient community’s real-world data to empower cancer patients to make the most informed decisions about their care.” Free for patients/caregivers. USA
“We provide services for patients that raise awareness and facilitate access to clinical trials. These patient-focused services are part of the broader solution EmergingMed hosts for clinical trial sponsors and investigators to overcome barriers in the “last mile” of enrolling patients in clinical trials.”
“Clinical trials matching technologies can find any trial on earth that might be relevant to your condition.” Offers peer-to-peer support and more via their cancer app. International
Not a matching service, but a search engine with trials around the world. It can be difficult to navigate, but all the information is there. Anyone can use this, not just US citizens. Make sure trials are “recruiting” and “interventional” (although “observational” GBM trials are helpful for research in general).
Apps (GBM-specific and other cancers and conditions)
Roon: A supportive place online for people navigating glioblastoma. Free app with information, resources, and support.
BelongLife: free app with support, information, MD Q&As
EndBrainCancer: free app to help guide your GBM journey