July #BTSM Chat – Addressing Patient Symptoms and Clinical Trials with The National Brain Tumor Society

#BTSM chats teamed up with The National Brain Tumor Society (NBTS) for July’s chat to discuss addressing patient symptoms and clinical trials, and, we even made an awesome, special logo for the event:

july chat logo

NBTS made a really cool storyboard to recap highlights of the chat here if you’re interested in seeing more of the full conversation. I was off the grid and in Montana when this month’s chat took place, and The Liz Army did a fantastic job moderating. NBTS also launched a new, and brief survey (that will take less than a minute to complete) to gather patient/caregiver perspectives which I encourage you to take here. When asked about the quantity of benign vs. malignant brain tumor clinical trials, NBTS responded that: “Clinical trials can be for both malignant and benign…often more in malignant space, though. early phase clinical trials evaluate safety and identify evidence of biological drug activity, such as tumor shrinkage. later phase efficacy trials commonly study drug clinical benefit, eg increased survival or improvement in symptoms.”

  • Q1: [for NBTS] What does the term “clinical trial endpoints” mean?

– A1: “Endpoints are outcome measures that allow us to decide whether a treatment provides clinical benefit” – NBTS

  • Q2 [for everyone]: What are the top symptoms that you think should be addressed in brain tumor drug development?

– A consensus answer was a drug that could simultaneously shrink tumors while easing seizure and headache symptoms would be ideal, as well as one that does not cause tremors, which Temodar (a commonly used oral chemo pill for brain tumors) does. In a perfect world, this drug would also not cause a change in appetite and minimize the need for steroids, eliminating moon face.

  • Q3: Have you (or your loved one) taken part in a clinical trial–if not, what has prevented you from taking part in a clinical trial?

– Many participants responded that a clinical trial was never discussed, nor offered to them.

  • Q4: If you DID participate in a brain tumor clinical trial, how did you find out about it?

– One of the better resources to search by tumor type is clinicaltrial.gov if you’re interested in finding one

  • Q5: If you had the opportunity to help give input on the development of brain tumor clinical trials, would that be of interest?

NBTS is currently working on their own clinical trial finder (nice!), where people will be able to search by tumor-type. In the meantime, the Alliance for Clinical Trials In Oncology is a way for patients to get involved in developing clinical trials that matter. Those involved can:

  • Attend and participate in scientific meetings
  • Review study concepts and protocols
  • Assist in designing study accrual strategies
  • Develop plain language study result summaries
  • Make presentations to interested groups of scientists and clinicians

Tune in for the next #BTSM chat taking place on August 3rd, same time, same place!





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