October 2014

Transforming Tomorrow, Today
News & Updates from the National Brain Tumor Society
Patient & Caregiver Survey Receives Huge Response

During July and August, we asked the community to take part in the Jumpstarting Brain Tumor Drug Development Coalition Patient & Caregiver Survey to help inform the ongoing efforts of our Clinical Trial Endpoints Initiative.

The response from all of you was astounding. We received more than 1,800 submissions* and learned a great deal more about the wants and needs of brain tumor patients, survivors, caregivers, and loved ones.

The response was so robust that we have only just begun to analyze the many important findings from this survey.

To begin with we pulled some top-level, interesting findings to report on:

  • Respondents were split fairly evenly between those identified as a patient or survivor, and those that were caregivers (54% caregiver; 46% patients)
  • Among patients and survivors responding to this survey, the tumor types most reported were:
    1. Astrocytoma or glioblastoma multiforme (29%)
    2. Meningioma (26%)
    3. Oligodendroglioma (15%)
  • Among patients, the top three measures they ranked as most important for consideration in future drug development efforts were:
    1. Ability to retain brain function
    2. Ability to retain motor skills to walk and perform basic tasks
    3. The third most important factor for patients varied by tumor type demonstrating how size, location, and grade of tumor can effect symptoms
  • Interestingly, caregivers ranked the ability to retain personality and mood much higher than patients and survivors.


In the coming weeks and months we will share additional noteworthy results centered around symptom and function measures, clinical trial participation, and treatment modalities with the community.

*Note: not all 1,800+ respondents answered every question

From the Blog
October 3, 2014
Guest Blog: Cancer Did Not - And Will Not - Win

Adrienne Wilk is a volunteer advocate for the National Brain Tumor Society. She serves as the State Lead Advocate for Tennessee, and also takes part in a number of fundraising activities for the National Brain Tumor Society. She wrote about her father"s battle with cancer. Read More

September 29, 2014
Making Sense of Project Impact: Pre-Clinical Testing

Before a potential new medicine or treatment can even enter the clinical trial process, it must first show promise in what is called the "preclinical" setting. Today, we want to spend some time talking about a major piece of our newest pediatric initiative, Project Impact, the "preclinical testing platform." Read More

see all blog posts
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ImmunoCellular Therapeutics Receives Positive Regulatory Feedback on ICT-107 Supporting Advancement to Registrational Phase III Testing in Newly Diagnosed Glioblastoma

Handheld Scanner Could Make Brain Tumor Removal More Complete, Reducing Recurrence
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National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow. This means effecting change in the system at all levels.
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