International collaboration led by Fred Hutchinson Cancer Center will create a molecular reference landscape to improve diagnosis and inform future treatments for rare spinal tumors
National Brain Tumor Society (NBTS) today announced a new, multi-year research project through its program, the Collaborative Ependymoma Research Network (CERN), focused on improving the biological understanding of spinal ependymoma, a rare and understudied type of central nervous system tumor that affects both children and adults.
The project, titled “Creating a Reference Landscape for Spinal Ependymoma,” is led by Eric Holland, MD, PhD, at Fred Hutchinson Cancer Center in Seattle and brings together an international consortium of researchers to analyze tumor samples using advanced molecular techniques, including RNA sequencing. The goal is to more precisely define spinal ependymoma subtypes, reduce diagnostic uncertainty, and lay the groundwork for future, biologically informed treatment strategies. Dr. Holland will receive $150,000 per terms of the grant.
Ependymoma is a rare brain and spinal cord tumor with highly variable treatment outcomes. While overall survival rates can appear relatively favorable compared to other CNS tumors, many patients—particularly those with spinal disease—experience recurrence, progression, chronic pain, and long-term neurological complications. Accurate diagnosis is critical to guiding care, yet even with recent updates to World Health Organization (WHO) classification criteria, significant gaps in knowledge remain.
“Spinal ependymoma has lagged behind other brain and spine tumors in terms of molecular characterization, and that has real consequences for patients,” said Kim Wallgren, Executive Director of CERN. “This project reflects the role advocacy can play not only in funding research, but in convening the right expertise to ask the right questions. Our spinal ependymoma community has long told us that their experiences and needs are overlooked, and this effort is about changing that reality.”
Recent advances supported by CERN and NBTS—including the identification of a particularly aggressive subtype of spinal ependymoma with MYCN amplification—have demonstrated the power of detailed molecular analysis to reshape diagnosis and care. Building on this progress, the new project will assemble and analyze a large, shared dataset of spinal ependymoma samples, including myxopapillary ependymoma, to determine whether additional biologically distinct subgroups exist or whether misclassification has contributed to inconsistent outcomes.
“Our experience studying rare cancers shows that molecular data can reveal patterns that are simply not visible through traditional pathology alone,” said Dr. Holland. “By creating a comprehensive reference landscape for spinal ependymoma and making the data openly available, we can help the field reach consensus more quickly and move toward more rational, targeted approaches to treatment.”
The project was conceived through discussions convened by CERN leadership at a Society for Neuro-Oncology meeting in 2024 and reflects CERN’s long-standing strategy of accelerating progress in ependymoma through collaboration, data sharing, and sustained investment. The research will be conducted as an international effort to ensure sufficient sample size for this rare disease and to maximize the impact of the findings across the global neuro-oncology community.
This work will be fully funded through philanthropic support from the ependymoma community and represents the latest in a series of NBTS- and CERN-supported initiatives aimed at defining the biology of ependymoma and identifying future therapeutic opportunities.
About the Collaborative Ependymoma Research Network (CERN)
The Collaborative Ependymoma Research Network (CERN) Foundation is a program of the National Brain Tumor Society and is dedicated to improving the care and outcomes of people with ependymoma through awareness efforts, coordinated research, and community engagement.
About the National Brain Tumor Society
Building on over 30 years of experience, the National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers. Our focus on defeating brain tumors and improving the quality of patients’ lives is powered by our partnerships across the science, health care, policy, and business sectors. We fund treatments-focused research and convene those most critical to curing brain tumors—once and for all. Learn more at BrainTumor.org.
