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Glioblastoma clinical trial matching & support services

These services — some web-based, other via phone or email — can help you: find a clinical trial or center of excellence, get a second opinion and support, and navigate insurance and disability benefits. Some services are only for people in the US (or willing to travel), but there are international options.

Most neuro-oncologists recommend people diagnosed with GBM consider a clinical trial

Don’t know where to start or feel intimidated? Cancer.net has information in text, video, and podcast form.

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.” US

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.” US

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.” US

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. International (based in the US and Israel) 

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. International

TrialJectory “TrialJectory is a patient-first digital health company with a mission to democratize access to advanced cancer treatment through clinical trials.  TrialJectory 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. US-based, but international 

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. US-based, but anyone can use it, 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). India

Brain Donor Project — non-profit that will facilitate the donation of post-mortem brain tissue for scientific research at no cost to the family. Once the forms are completed, the family makes one phone call and they take care of everything. US only

Death with Dignity  — non-profit that provides information, education, and support about Death with Dignity as a legal end-of-life option to patients, family members, legislators, and advocates. Website lists state-specific support organizations, where they exist. US-based

End Well — “Non-profit dedicated to the belief that all people should experience the end of life in a way that matches their values and goals.” US-based