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URGENT opportunity to help GBM patients

OurBrainBank hopes everyone in our community is safe.

Here's one useful thing you can do today to help GBM patients: please comment on the FDA’s proposal to improve the clinical trial process. 

– Full text of proposed changes: Draft Guidance on Demonstrating Substantial Evidence of Effectiveness for  Human Drug and Biological Products 
– Effective comment tips

Craft your own or feel free to use this: 

[begin sample comment]

I support this effort, GBM patients need new treatments now. I endorse the following wording found in section V. A. (lines 543 to 550)

When the disease is life-threatening or severely debilitating with an unmet medical need 

As defined in 21 CFR 312, subpart E (21 CFR 312.81), the term ‘life-threatening’ means diseases or conditions where the likelihood of death is high unless the course of the disease is interrupted, and diseases or conditions with potentially fatal outcomes, where the endpoint of clinical trial analysis is survival; the term “severely debilitating” means diseases or conditions that cause major irreversible morbidity. An unmet medical need is a condition whose treatment or diagnosis is not addressed adequately by available therapy.

[end sample comment]


Deadline is March 19, 5pm ET

Share please — ask all your friends and family who are (we hope) safe and home today to do this one good thing. It might save a loved one’s life.

In 2019, OurBrainBank conducted a survey for the first national GBM Awareness Day, examining the current standard of care. We received 400+ responses in less than a week. There is an urgent need for change in treatment and trial protocols. 95% of patients want to enroll in clinical trials, only 10% actually do. Low trial enrollment means patients don’t have access to new therapies, and researchers can’t complete their studies. 

Read public comments

OurBrainBank’s official comment

Thank you and stay safe!


Best,
The OurBrainBank Team: Jessica, Aurelia, and Martha

 

THANK YOU & PLEASE GIVE
 
Please consider a recurring gift via PayPal, donate on JustGivingOurBrainBank.org, or mail a gift to the address below
DONATE TODAY
Get the Free OurBrainBank App
GBM patients and carers in the UK or US (patient must be 18+)
Registration code:
OBBUK (UK)
OBB100 (US)
Please spread the word. More than 600 people have downloaded the app. The more people we have, the more progress we'll make. 

   

Comments from app users:
"Awesome news! I am recording my symptoms with the app, easy to use and I’m excited about this app!"
"I just passed Day 50 and responded to the midpoint questionnaire. It’s so simple... everyone should do it!"

Join our Facebook group for GBM patients and caregivers. Email us for invites to free video support chats. Visit our YouTube channel for longterm survivors' stories and "how to" videos for our app. Instagram too.

Want to help? Donate, set up a crowdsourcing page, give on JustGiving or mail a check to OurBrainBank P.O.Box 835 Telluride, CO 81435-0835 or a cheque to OurBrainBank UK 41 Cheverton Road, London N19 3BA

Help OurBrainBank by shopping on Amazon. Start on Smile.Amazon.com (US) or Smile.Amazon.co.uk (UK) and select OurBrainBank as your designated charity.
 
Please email us questions or comments, we would love to hear from YOU!  
 
The OBB study is approved by the IRB in the US and is UK University Ethics approved. OBB launched in the US in 2018 and is a 501(c)3. UK Registered Charity #1184699.
Founder and Chair, Jessica Morris, living with glioblastoma

Photo by Maria Spann
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