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Glioblastoma guides, clinical trial matching, and support services

Below are links to guides and 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.

Many 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.

Guides
US: Free PDF booklets from the Musella Foundation and Novocure explain GBM and treatment options.
UK: Free PDF booklet from brainstrust explains NHS GBM treatment
AustraliaFree hardcopy guide/diary (or PDF version to download)

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
“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

NCI-Connect
The National Cancer Institute offers services including, support, referrals, help finding a clinical trial, and free consultations (second opinion) at Johns Hopkins Hospital. USA

Conquer Magazine: The Patient Voice
Online and print magazine about people affected by cancer. List of financial assistance resources for people living with a brain tumor and their families. USA

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.” 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

Brain Tumour Research
Information including clinical trials and opportunities to participate in research registries including tissue and brain donation. UK

Clinical Trials: information and matching services
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. USA

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
“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

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

ClinicalTrials.gov
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). 

Clinical Trials in India

International Groups
International Brain Tumour Alliance (list of brain tumor charities) 

Online support and communities (care partners and patients)
Facebook (private groups)
OurBrainBank Glioblastoma Patient & Caregiver Community and Mentorship program
GBM Survivors to Thrivers
Glioblastoma Support Group
Facebook has many more GBM-related groups, search “GBM” or “Glioblastoma” for targeted groups (care partners & families, regional (UK), or treatments like Optune)

Twitter: monthly support chats: Live chat the 1st (usually) Sunday of each month, 5p PT/8p ET. All brain tumors, not just GBM. #BTSM

Inspire: online discussion and support, managed by the American Brain Tumor Association. International (mostly US)

National Brain Tumor Society live online support group, third Sunday of each month, 7 pm ET/4 pm PT

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.” USA

Imerman Angels
One-on-one mentorship and support from others living with GBM. USA

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

Financial help and advice
National Brain Tumor Society: list of financial resources USA

Musella Foundation: Brain Tumor Drug Copayment Assistance Program USA

Conquer: The Patient Voice: list of financial assistance resources USA

brainstrust: help with welfare and benefits UK 


Home healthcare assistance & healthcare advocates

How to find a caregiver article from Cancer.net/ASCO

Family Caregiver Alliance Advice and resources on obtaining help at home (US)

Advocate Connection Directory of independent, professional health/patient advocates and care managers (US and Canada)

Writers on GBM and brain tumors
All in my Head: A memoir of life, love, and patient power
a memoir by OurBrainBank founder Jessica Morris, 2022

Patrick Koske-McBride: long-term GBM survivor, who writes about cancer, GBM, disability rights, and other topics with dark humor

Katherine Onk: Glioblastoma Playbook part 1, part 2, and her father’s GBM journey

Courtney Burnett: Difficult Gifts, a book by a young physician who is diagnosed with brain cancer

Research studies
Count Me In, the Brain Tumor Projectbraintumorproject.org/count-me-in

Brain Tumor Virtual Trials (Al Musella Foundation) Brain tumor registry using PRO (Patient Recorded Outcomes)