Glioblastoma guides, clinical trial matching, and support services
Recommended guides to living with GBM
Below are services — some web-based, other via phone or email — that can help you: find a clinical trial or center of excellence, get a second opinion, navigate insurance and disability benefits, and more.
Most neuro-oncologists recommend people with GBM consider a clinical trial. Some services are only for people in the US (or willing to travel), but there are international options.
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.” US
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.” US
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.”
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.” US
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.” $175 donation (can be waived) US
Cancer Support Community “The Helpline provides guidance, resources and support to cancer patients or their loved ones with a variety of needs—from getting information about cancer, identifying a local support group, and finding housing for treatments. We provide help with coping in over 200 languages.”
brainstrust “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.” Comprehensive list of experimental options. UK
EmergingMed “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.”
Belong.Life’s “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.
NAVIFY Clinical Trial Match allows you to search the largest international trial registries, including ClinicalTrials.gov, European Medicines Agency and Japan Medical Association Center for Clinical Trials.
TrialJectory “TrialJectory is a patient-first digital health company with a mission to democratize access to advanced cancer treatment through clinical trials. Recognized by TIME as one of “The 100 Best Inventions of 2020,” TrialJectory uses artificial intelligence (AI) 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.
ClinicalTrials.gov — Not a matching service, but a search engine of thousands of trials around the world. It can be difficult to navigate, but all the information is there. Anyone can use this, not just US citizens.
Clinical Trials in India — Search engine of all trials in India. You want to make sure they are “recruiting” and “interventional” (although “observational” GBM trials are helpful for research in general).