Piecing together sustainable care for children with brain tumors worldwide

Treating central nervous system (CNS) tumors is like assembling a complex puzzle with pieces representing specialized care, timely diagnosis and advanced treatment. Yet in many parts of the world, pieces are missing. Some regions lack trained neuro-oncologists and neurosurgeons, while others face shortages of advanced imaging technology or essential medicines. In resource-limited countries, families may travel hundreds of miles to reach a specialist, while in other areas, financial constraints or incomplete cancer registries leave patients invisible to the health care system. Without all the pieces, the full picture of hope and healing for children with brain tumors remains incomplete.

“When we look globally at pediatric oncology, especially in resource-limited countries, differences in care are particularly pronounced for children with CNS tumors,” explained Daniel Moreira, MD, MEd, St. Jude Global Neuro-Oncology Transversal Program co-director and St. Jude Global Academy director. “That’s partly because their care requires more infrastructure and resources, such as neurosurgery, radiotherapy and chemotherapy, making it inherently more complex than other cancers. There’s also a perception that CNS tumors are harder to address, and as a result, they haven’t always been prioritized to the same degree.”

The Global Neuro-Oncology Transversal Program is working to change that. It was created to address critical gaps in pediatric neuro-oncology care, especially in resource-limited countries. Because these gaps have many complex causes, the program takes a comprehensive approach, working across the entire spectrum of care with each initiative designed to strengthen a different part of that continuum, ensuring improvements are comprehensive and sustainable.

“Our focus is on improving brain tumor care in resource-limited countries through three core pillars: education, research and capacity building,” said Ibrahim Qaddoumi, MD, MS, Global Neuro-Oncology Transversal Program co-director.

“We start by identifying what gaps exist, what the data reveals and what’s driving those deficiencies,” added Moreira. “That insight helps us set priorities. Then, we act, guided by both evidence and input from our partners.”

The program combines education, capacity building and research as interconnected drivers of progress, training clinicians, evaluating what works and refining approaches through data and collaboration.

Building global knowledge, networks and capacity

Capacity building is a cornerstone of the program’s mission to elevate care and research standards across differing health care settings. The program is building a structured global network of clinicians and mentors dedicated to improving pediatric neuro-oncology care. Through this teamwork, they can identify gaps in training, treatment and access across regions.

“Too often, institutions work in isolation to solve similar challenges; this network bridges those efforts,” said Moreira.

Today, more than 50 institutions are part of this network, the Global Alliance for Pediatric Neuro-Oncology (GAPNO), working together to identify barriers, share solutions and link local expertise with global support from St. Jude. GAPNO is the first multinational, multidisciplinary group focusing on pediatric CNS tumors in resource-limited countries.

Building on this global collaboration, the program is working to establish a multidisciplinary clinical care team in Egypt to help treat neurofibromatosis type 1, an inherited cancer predisposition syndrome characterized by the development of CNS tumors. This effort aims to create a center of excellence dedicated to improving the diagnosis, treatment and overall outcomes for children affected by this disorder.

A global PANORAMA

Through data collection, training and collaborative partnerships, the team helps institutions strengthen their ability to care for children with CNS tumors. A key tool in this effort is the Pediatric Neuro-Oncology Resource Assessment Aid (PANORAMA), a comprehensive, data-driven needs assessment that identifies gaps in infrastructure, expertise and clinical practice. The assessment spans 13 key domains, including national health care systems, hospital infrastructure, workforce capacity, funding, laboratory and imaging capabilities, neurosurgery, pathology, chemotherapy, radiation therapy, supportive care, and patient outcomes. It has a total of 322 questions, offering an in-depth picture of each institution’s strengths and areas for improvement.

By quantifying these factors, PANORAMA provides a framework to analyze what deficiencies exist and how they contribute to gaps in care. The insights gained allow institutions to prioritize their efforts and measure progress over time, ensuring that resources are directed where they can have the greatest impact.

“PANORAMA serves as a launch point for setting priorities across the institutions where we conduct the assessment,” said Moreira. “It gives us a shared baseline to build from, and a way to track the impact of our collective efforts.”

Education and collaboration across borders

To support long-term impact, the program invests heavily in education and research. The Virtual Pediatric Neuro-Oncology Fellowship is a two-year training program designed to help physicians in resource-limited countries become specialists in pediatric brain tumors, without leaving their home institutions. This keeps expertise local while strengthening those institutions. The fellowship provides specialized education in the diagnosis, treatment and long-term care of children with brain and CNS tumors. Fellows engage in virtual and hands-on learning, clinical visits and research.

“We require each fellow to complete a research project, which is often a retrospective review to help establish baseline data,” explained Elizabeth DiNovis, program coordinator of the Global Neuro-Oncology Transversal Program. “This allows them to measure the impact of their participation in the program.”

Neurosurgery is one area where such specialized training is essential. “We support our neurosurgery fellows through targeted education, including workshops, which allow them to safely refine their surgical skills, rather than learning in the operating room,” explained Mauricio Muñoz, MD, a neurosurgeon from El Salvador who is collaborating with the program’s educational efforts.

Additionally, the program has established regional training and referral centers strategically located around the world, allowing fellows to access advanced neurosurgical training at hubs that bring training closer to home. “The fellowship allows doctors to continue serving their local communities while gaining world-class expertise,” said Qaddoumi. “The aim is to implement an innovative training strategy that maximizes resources and leverages global mentors to expand the pediatric neuro-oncology workforce worldwide.”

The program also runs the Neuro-Oncology Training Seminar, a multidisciplinary course through the St. Jude Global Academy, designed for all clinicians involved in the care of children with CNS tumors, including pathologists, radiation oncologists, pediatric oncologists and neurosurgeons. Participants learn the technical aspects of diagnosing and treating brain tumors while building a global professional network. The seminar includes a three-month online component followed by a one-week in-person session at St. Jude, focusing on practical application.

Measuring impact through research and data

Complementing the educational and capacity-building initiatives is a robust research program, which overlaps with and informs the training efforts. This includes innovative interventions aimed at measuring and improving the effectiveness of care. For example, data published in Neuro-Oncology Advances showed that teams participating in the neuro-oncology training seminar demonstrated improved knowledge and multidisciplinary communication, strengthened care coordination and clinical decision-making, and prompted previously non-multidisciplinary tumor board institutions to establish tumor boards.

In addition to measuring the impact of education initiatives, the program conducts research to understand the challenges and outcomes of treating pediatric CNS tumors better in resource-limited countries. One promising project involves the prospective collection of information on the diverse presentations of CNS tumors in Peru. The goal is to establish baseline information on presenting symptoms, the time from symptom onset to diagnosis (the pre-diagnosis symptom interval) and factors that may contribute to delays in diagnosis. Complementing this work, the program is developing and evaluating a curriculum to help primary care providers in Peru recognize the signs and symptoms of CNS tumors in children to ultimately reduce the pre-diagnosis symptom interval for children with CNS tumors in Peru.

In a study published in Neuro-Oncology Advances, the team reported findings from the largest cohort of patients from resource-limited countries with medulloblastoma, the most common malignant brain tumor. The study included 335 patients from nine countries and provided insight into outcomes, such as surgical success, access to radiotherapy, treatment abandonment and overall survival. This research helps deepen understanding of the challenges faced in these settings and informs targeted interventions, which can be further assessed with the PANORAMA assessment tool.

Moreira is also leading a global clinical trial, GLOBOTRK, currently active at St. Jude and expanding to Egypt, India, Jordan, Brazil and Peru. The study tests whether the drug entrectinib can treat high-grade gliomas and other CNS tumors with genetic NTRK or ROS1 fusions. Equally important, the trial serves as a model for how to conduct global pediatric cancer research, bridging highly resourced and resource-limited settings. By analyzing outcomes across multiple countries, the research adds more pieces to the global puzzle of pediatric brain tumor care, showing what works and where gaps remain.

Global collaboration for sustainable pediatric neuro-oncology care

While tackling the issues surrounding quality care for children with brain and CNS tumors worldwide can seem daunting, together, bold strides can lead to progress. “The gaps are there, but so are the opportunities,” said Sergio Licona, MD, MPH, program manager of the Global Neuro-Oncology Transversal Program.

“We’ve already helped establish several centers of excellence across different regions, and once they’re in place, they take on a life of their own, training others and expanding expertise across neighboring countries,” said Qaddoumi. “The goal is sustainability, reaching the point where these centers carry the work forward themselves.”

By empowering local institutions and fostering regional expertise, the program is laying the foundation for lasting impact, bringing high-quality care closer to every child, no matter where they live.