A CBTN portrait of progress and the work still ahead for children and families.
By Brian Rood, MD, Executive Co-Chair, CBTN Executive Board
Childhood Cancer Awareness Month asks us to reflect on progress. At the Children’s Brain Tumor Network (CBTN), that reflection also strengthens our resolve.
Children with brain tumors still face diseases we don’t fully understand, treatments that can cause lifelong harm, and too many diagnoses with limited options. Every delay carries a human cost. We don’t accept the barriers slowing progress as inevitable. CBTN was built to remove them.
For me, that urgency is clearest in the clinic, where a treatment plan begins with a child, not cancer in the abstract. Care must account for the tumor’s biology and location, the child’s age and development, what surgery can safely accomplish, and how the benefits of different therapies compare with the harm they may cause.
These decisions are rarely simple because no two children or tumors are exactly alike. That reality has shaped my career as a pediatric neuro-oncologist and researcher, reinforcing my conviction that we must learn across institutions and throughout each child’s disease to make better decisions for the next child.
Building the Framework for Change
Pediatric brain tumors encompass many distinct diseases, and even tumors sharing a diagnosis can behave or respond to treatment differently. At any one hospital, too few patients may have a particular rare tumor or molecular feature to reveal patterns that could point toward better care.
For decades, that scarcity reinforced a research system of isolated collections, disconnected studies, and information that was difficult to combine. The people in this field bring extraordinary expertise and commitment, but individual dedication can’t overcome a system that keeps critical data, biospecimens, and knowledge separate.
CBTN replaces that fragmentation with a shared model of discovery. Institutions contribute through a common framework that connects data and biospecimens, enabling researchers to work across institutional and disciplinary boundaries and build on one another’s knowledge.
This commitment has grown into a global research ecosystem spanning 35 member institutions across nine countries. More than 9,000 patient and family participants have contributed to a resource that includes more than 85,000 biospecimens.
The strength of this network lies in what that scale enables. Rare tumors become possible to study, findings can be tested across health systems, and imaging can be examined alongside molecular information, treatment history, and outcomes. A sample collected during surgery can contribute to discoveries a family and care team couldn’t have anticipated.
CBTN has shown that pediatric brain tumor research can operate differently. Now, we’re building on that foundation with greater speed, depth, and purpose.
Bringing Discovery Into Focus
My own research has shown me the power of connecting different kinds of information. A tumor’s DNA can reveal changes that may be driving its growth, but it doesn’t tell the entire story. Proteins show us more directly what tumor cells are doing, while imaging, pathology, treatment history, and outcomes provide essential context.
Together, these pieces help explain why tumors that appear similar may behave differently, and why tumors with different names may share a biological weakness that could make them vulnerable to the same treatment.
In one CBTN study to which I contributed, combining multiple layers of molecular information across several pediatric brain tumor types revealed patterns no single data type could show. More recent work in medulloblastoma, an aggressive childhood brain cancer, has distinguished groups of patients with different outcomes within established tumor subtypes. These findings move us beyond broad labels toward a more precise understanding of the tumor we’re treating.
That same approach is advancing more personalized immunotherapies. Our research team has identified markers found only on an individual child’s tumor cells and trained their immune cells to recognize and attack them in the laboratory. Although this work is as yet only being used to augment current treatments, it points toward therapies that attack cancer more selectively while reducing harm to a child’s developing brain and body.
Our goal can’t be survival at any cost. We’re determined to help more children survive and give them the opportunity to live more fully beyond cancer.
The Minds Driving Momentum
Data and technology are essential, but they won’t cure pediatric brain cancer on their own. Progress depends on clinicians, laboratory scientists, data scientists, pathologists, radiologists, engineers, statisticians, and many others applying their expertise to the same challenge.
There’s tremendous brainpower in this field, and curing pediatric brain cancer will require all of it. CBTN connects that expertise so people across disciplines can challenge assumptions and pursue questions no single laboratory or institution could answer alone.
We’re also confronting barriers that keep this expertise from reaching its full potential. Data collected across hospitals aren’t always organized consistently. Important information may be incomplete or held in systems that can’t communicate. Patient and family perspectives are under-represented. Researchers can spend months or years preparing data before investigating their scientific question, while the path from an important finding to a decision that can help a child remains far too long.
CBTN is systematically dismantling those barriers by establishing common standards, connecting information across disciplines, and creating research-ready resources that capture a fuller picture of each patient’s journey. Investigators can spend less time reconstructing records and more time pursuing discoveries.
Bringing the Future of Treatment Into Focus
Our next major step is to shorten the distance between research and care. Through the ARPA-H Pediatric Care eXpansion program (PCX), CBTN’s network and the AI-enabled Real-time Analysis and Discovery in Integrated And Networked Technologies (RADIANT) platform will support real-time data sharing across pediatric hospitals, beginning with CBTN institutions and expanding through the Children’s Oncology Group to more than 200 hospitals nationwide.
The vision is a continuously learning health system in which every patient’s experience strengthens the knowledge available to clinicians and researchers. Artificial intelligence will support—not replace—clinical judgment and the relationship between a physician and family, helping identify patterns across more information than any one person could evaluate.
CBTN is moving decisively toward that future by connecting resources, preparing data for immediate discovery, and building faster pathways between research and care. We’ve built the network, infrastructure, and collaborative community needed to accelerate progress. Our responsibility now is to put their full power to work.
Every sample and data record begins with a child and family who chose to contribute during one of the most difficult moments of their lives. We honor that trust by ensuring those contributions are used, shared, and carried forward to pursue more effective, less toxic treatments and cures.
As a physician, I want better options for the child sitting in front of me. As a researcher, I know those options depend on learning from children far beyond my institution. And as a CBTN leader, I know no institution, technology, or individual will solve this alone.
Together, we have the knowledge, determination, and collective strength to change what’s possible in pediatric brain tumor research and care. Your support helps CBTN connect the data, expertise, and technology needed to accelerate more effective, less toxic treatments and cures for children with brain tumors. Progress takes all of us. Consider giving to CBTN.
P.S. I recently joined The Lilabean Foundation Podcast to discuss the different therapies used to care for children with brain tumors and why every treatment plan must be tailored to each child. Listen to the episode: [link releases 9/16]
ABOUT THE AUTHOR
Brian Rood, MD, is Executive Co-Chair of the Children’s Brain Tumor Network Executive Board and a pediatric neuro-oncologist at Children’s National Hospital, where he serves as Director of Molecular Biology and Data Science and Associate Director of the Brain Tumor Institute. His research focuses on proteomics, biomarker development, and more precise, less toxic approaches to treating pediatric brain tumors.
