Following Her Lead: A Mother’s Journey through Pediatric Brain Cancer

For families facing a pediatric brain tumor diagnosis, one thing quickly becomes clear: care, information, and expertise are often spread across many hospitals and systems. While clinicians and researchers work tirelessly, the data that could help connect the dots is often fragmented, sealed in different formats, institutions, and silos. A newly announced national initiative, PCX (Pediatric Care eXpansion), aims to change that. Backed by up to $50 million in milestone-based funding from the Advanced Research Projects Agency for Health (ARPA-H), PCX is designed to dramatically improve how pediatric health data is shared, starting with pediatric brain tumors. Why This Matters to Our Community At the Lilabean Foundation, we believe progress happens when science and community come together. PCX represents a meaningful step toward a future where no child’s story is broken by fragmented data and where every child benefits from what we learn together. Why Data Sharing Matters So Much Today, a child’s clinical information, like doctor notes, scans, and treatment details, often lives separately from research data, and research data has not historically supported clinical data. Moving information from one place to another has historically required people to manually copy and paste data… a slow, expensive process that makes it nearly impossible to scale nationally. Even when hospitals agree to share data, it can be cumbersome to access and integrate. When care happens across multiple institutions, something that is common in pediatric brain cancer, the patient's clinical data becomes fragmented, making it challenging for researchers to see the full picture of a child's clinical journey. PCX is designed to address this challenge by creating a space between clinical care and research, where clinicians can view patient information in the context of prior patients, research cohorts, and real-world outcomes to support decision-making. At the same time, this information contributes to broader, governed research datasets, strengthening their completeness and accuracy for discovery and learning at scale. The Role of CBTN and the RADIANT Platform This initiative builds on years of groundwork laid by the Children’s Brain Tumor Network (CBTN) , a global collaboration that has already shown what’s possible when institutions share data and samples responsibly. At the heart of PCX is RADIANT , a secure data platform developed through CBTN. RADIANT is being trained to use artificial intelligence (AI) to do something incredibly important and incredibly practical: Read unstructured clinical notes (like PDFs or free-text reports) Translate them into structured, searchable data Reduce the need for manual data entry at participating sites Allow insights from research to eventually inform clinical care Why Pediatric Brain Tumors Were Chosen First There were two major reasons pediatric brain tumors were an ideal starting point for testing this model. First, pediatric brain tumors are among the most complex diseases to study. If a system can work here, where data comes from many sources, types, and institutions, it can work for many other pediatric conditions, too. Second, the groundwork for this moment was laid years ago, including through early philanthropic investments. The Lilabean Foundation helped make this possible by supporting CBTN’s “Project Accelerate,” a multi-year effort to expand the network’s capacity to process and use large volumes of brain tumor data. As part of that commitment, LBF funded over $650,000 to hire data engineers and bioinformaticians and help build out CBTN’s data infrastructure, enabling the consortium to handle more complex data and accelerate discoveries in our first multi-year gift back in 2021, and has continued to build on this commitment by donating to continued efforts to build a solid infrastructure at CBTN. Critically, Project Accelerate also enabled the generation of robust molecular data for patient samples that had not previously been accessible to researchers. This retrospective molecular data now provides essential context for ongoing and future research and becomes even more valuable as new patients receive clinical sequencing, allowing comparisons across time, cohorts, and treatment approaches. That investment, along with additional support from the Lilabean Foundation and other philanthropic partners, strengthened data standards, broke down silos, and expanded CBTN’s ability to create usable, research-ready datasets, making the network better prepared to pursue ambitious national initiatives like PCX. These capabilities—deep molecular data, strong data standards, and durable infrastructure—are foundational to RADIANT’s ability to connect clinical care data with research context in meaningful ways. Today, CBTN, once a consortium of just a few institutions, is a global network with trusted partnerships, shared standards, and a collaborative culture that makes scalable data sharing possible. As leaders involved in the PCX initiative put it plainly: “This could not have happened if CBTN wasn’t prepared with established infrastructure and resources.” That readiness didn’t happen overnight. It reflects years of scientific progress and thoughtful investment from partners like the Lilabean Foundation.