Pediatric brain tumor research depends on collaboration. Hospitals worldwide contribute patient data, tumor samples, and clinical expertise to help researchers better understand these complex diseases. Yet even in highly collaborative environments, the data behind that work has often remained difficult to connect.
Different types of information live in different systems. Genomic data, clinical records, imaging, and treatment details are often collected separately and organized in different formats. While researchers can access enormous amounts of information, comparing and combining it across institutions has not always been straightforward.
At the Children’s Brain Tumor Network (CBTN), solving this challenge has become central to accelerating discovery. For more than a decade, CBTN has brought institutions together around a shared goal: bringing together data, biospecimens, and expertise so researchers can study rare pediatric brain tumors at the scale needed to uncover new insights.
A new collaboration with the Pediatric Proton/Photon Consortium Registry (PPCR) expands that vision. By connecting PPCR’s radiation oncology data with CBTN’s genomic, clinical, imaging, and biospecimen-linked data records, researchers are beginning to connect critical pieces of the pediatric brain tumor puzzle.
Radiation therapy is one of the three pillars of cancer treatment, alongside surgery and systemic therapies, including chemotherapy and medical therapies including chemotherapy, targeted therapies, and immunotherapy. Yet radiation therapy data has historically been difficult to incorporate into broader research efforts. PPCR has spent years building a registry that captures detailed information about radiation treatments, including the imaging used to guide therapy and how radiation is carefully planned and delivered.
CBTN brings complementary strengths. The network has built the world’s largest collection of pediatric brain tumor datasets, linking genomic, clinical, imaging, and biospecimen resources. Together, these efforts create new opportunities to examine how radiation therapy interacts with tumor and patient biology.
Bridging Data Across Disciplines
For clinicians like Dr. Sarah Leary, a pediatric neuro-oncologist at Seattle Children’s Hospital, the collaboration reflects how patient care already works in practice.
“Radiation, surgery, and medicine are the pillars of how we treat cancer,” Leary explains. “In the clinic, we already work together across those disciplines. Now we’re building the research systems that allow the data to come together in a better way.”
Patients with brain tumors often receive care across multiple institutions. A child may undergo surgery at one hospital, receive radiation therapy at another, and return to their oncology or care team for follow-up. Historically, the data from those experiences has been stored separately, making it difficult for researchers to examine treatment patterns and outcomes across the full patient journey.
Integrating PPCR with CBTN helps close that gap. Radiation oncology data, including imaging and treatment planning information, can now be studied alongside genomic data and clinical outcomes.
The effort also reflects a broader scientific strategy that CBTN calls the M3 Approach: multimodal, multi-omic, and multidisciplinary research. This model emphasizes integrating multiple types of data (multimodal), analyzing tumors across biological layers (multi-omic), and bringing together experts from different disciplines (multidisciplinary) to work as one collaborative community.
This approach allows researchers to ask more complex questions about how treatments influence long-term survival and quality of life.
Building the Infrastructure for Discovery
Integrating radiation data from PPCR with CBTN’s genomic and clinical datasets requires more than collaboration. It requires reliable systems that allow data from many institutions to be shared in consistent ways.
Tatiana Patton, Director of Operations for CBTN, has helped coordinate the operational infrastructure behind this work.
“Reliable, coordinated systems are essential to collaborative science,” Patton says. “When the infrastructure works, investigators can focus on generating the insights that move the field forward and improve outcomes for children.”
One of the biggest challenges in connecting complex medical data lies in aligning workflows, terminology, and regulatory requirements across institutions. Researchers, clinicians, and data scientists must work together to define how information is collected and shared so it can be used effectively.
The partnership between CBTN and PPCR represents an important step toward solving that challenge. This innovative effort connects radiation, genomic, imaging, and clinical data across institutions, creating a research ecosystem where discoveries can build on one another over time.
For families who consent to share their data for research, that progress carries special meaning. Each child and family’s experience may contribute to multiple research projects that may help guide better treatments for future patients.
As more institutions and data types become connected through efforts like this one, the potential to uncover new insights grows. For researchers and clinicians working to improve care for children with brain tumors, the goal remains clear: accelerate discovery so better, more informed treatments reach patients faster.
