Your voice has the power to make a difference — for those currently living with a brain tumor and for future patients.

Research is the only way to improve cancer detection, prevention, and treatment options. But sometimes, research studies are not designed to answer the questions that are most important to patients. NBTS has designed a program to encourage the patient voice in brain tumor research and is seeking applicants for the 2026-2028 cohort.

What is a research advocate?

Research advocates are patients, survivors, or care partners who are trained to provide the patient perspective and share their real-world experiences to help accelerate research and advance science that will benefit the community. Acting as a bridge between patients and researchers, they help patients understand scientific information and bring valuable insights to research activities from advisory boards and committees. Their role ensures that research activities are informed by the patient experience, improving both understanding and outcomes.

Brain Tumor Research Advocate Program

NBTS has developed the only Brain Tumor Research Advocate program to train, support and match research advocates to opportunities utilizing a cohort approach so community members can learn together at a steady pace and find comfort from their peers. Advocate training includes online education modules and virtual trainings led by NBTS and the Research Advocacy Network with neuro-oncology experts and stakeholders, and ongoing learning and skill-building opportunities. 

​​Various panels our research advocates have participated in include:

• Department of Defense (DoD) Glioblastoma Cancer Research Program (GBMRP), Rare Cancer Research Program (RCRP), and Peer Reviewed Cancer Research Program (PRCRP)
• National Cancer Institute (NCI)
• Local Hospitals and Institutional Review Boards (IRBs)
• National Brain Tumor Society (NBTS) Real-Time Research Review Sessions, Research Roundtables and Scientific Advisory Councils

Our research advocates can provide input on:

• Study design
• Identifying gaps and setting research priorities
• Peer review
• Promoting studies, recruiting participants, or supporting enrollment 
• Program development, pilot testing, surveys, or grant submissions
• Sharing and promoting research results

Members of Our Program

Members of our research advocate program include brain or spinal cord tumor patients, survivors, or care partners of any age with varying tumor types and background who are interested in serving as a liaison between the patient and caregiver community and scientific researchers.