First-of-its-kind Report Reveals Pediatric Brain Cancer Is Childhood Cancer Community’s Biggest Crisis

Central Brain Tumor Registry of the United States’ Statistical Report Validates Pediatric Brain Tumor Foundation’s Urgent Call for Action to Reverse Brain Cancer Trends in Children and Adolescents

A 2022 report published in Neuro-Oncology exposes an alarming reality for children, adolescents, and families facing pediatric brain cancer across the country. The Pediatric Brain Tumor Foundation (PBTF) funded this first-of-its-kind statistical report by the Central Brain Tumor Registry of the United States (CBTRUS) to increase understanding of the scope and severity of this childhood disease.

The results reveal that pediatric brain cancer is the childhood cancer community’s biggest crisis:

• More children under the age of 19 are diagnosed with brain tumors, and dying from them, than ever before, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates.
• There are significant disparities in the incidence of diagnosis and mortality rates among states. While the report doesn’t address the reasons for these disparities, we know that differences in access to treatment, environmental factors, and emphasis on pediatric cancer in state health policies warrant closer study.
• Pediatric brain cancer doesn’t discriminate but is a disproportionate threat to children of color, who experience lower survival rates than white children.
• While mortality rates have increased, the need for attention to survivorship is greater than ever. The estimated number of children and adolescents in the United States living with the aftereffects of brain tumors has increased by 45% since 2010.
• Even as their odds for survival have declined, children and adolescents diagnosed with brain tumors are, on average, living longer. This increase brings a higher demand for health resources and palliative care education for patients, survivors, and their families.

“This report from CBTRUS validates what the Pediatric Brain Tumor Foundation has been saying for years: Pediatric cancer demands more attention and a greater investment in the development of new treatments and resources for patient families,” says Courtney Davies, PBTF President and CEO. “Pediatric brain cancer trends are moving in the opposite direction of those for adults because childhood cancer does not receive the same level of attention, research, or financial commitment as adult cancers. The research community, pharmaceutical companies, healthcare policymakers, and funders must do more. Kids’ lives are at stake.”

Pediatric brain cancer presents a complex and unique problem.

There are more than 120 types of brain tumors in need of treatment advancements. Small patient populations for these individual tumor types, insufficient tissue samples, and the lack of research funding have led to an incomplete understanding of this disease.

Progress towards effective treatments or cures is also slow. Treatments developed for adult populations are ineffective for kids or contribute to long-term health complications. Because pediatric brain tumors are a numerically small problem, research scientists and pharmaceutical companies are not incentivized to study them. Meanwhile, the developmental, emotional, and financial impact on children diagnosed with brain tumors and their families is profound.

PBTF provides leadership toward a better future for kids.

PBTF is committed to leading the way toward a future without childhood cancer. This report provides insights that are shaping our response to this public health crisis. As a result of our analysis of the report, we are:

• Focusing greater attention on state-level health policy and advocating for emphasis on pediatric health.
• Redoubling our commitment to funding promising early-stage research. Every dollar PBTF invests attracts 12 dollars in follow-on funding.
• Directing family support resources to states where the need is greatest and where each dollar can make the most difference.

There is no cure for pediatric cancer without collaboration, and we need patient advocacy organizations, pharmaceutical companies, researchers, and caring individuals to walk alongside us as we address the local impact of pediatric cancer. Visit curethekids.org/get-involved to learn how you can make a difference. Learn more and access the report.

About the Pediatric Brain Tumor Foundation

No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF also funds and advocates for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. Learn more at www.curethekids.org.

About the Report and CBTRUS

The CBTRUS Statistical Report: Pediatric Brain Tumor Foundation Childhood and Adolescent Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2014-2018 contains the most up-to-date population-based data on primary brain and other central nervous system (CNS) tumors in children and adolescents available in the United States. It is the first of its kind to represent the pediatric and adolescent population, provide state-level data, and include molecular data for some tumor subtypes. The full report is published in Neuro-Oncology here.

This report was prepared for PBTF by CBTRUS Co-Scientific Principal Investigator Quinn T. Ostrom, Ph.D., M.P.H., and her research team from Duke University School of Medicine in collaboration with Co-Scientific Principal Investigator Jill S. Barnholtz-Sloan, Ph.D., the research staff affiliated with the NCI Division of Cancer Epidemiology and Genetics, and CBTRUS President and Chief Mission Officer Carol Kruchko. CBTRUS, in collaboration with the Centers for Disease Control and Prevention (CDC) and National Cancer Institute (NCI), is the largest population-based registry focused exclusively on primary brain and other central nervous system tumors in the United States and represents the entire US population. Learn more about CBTRUS at www.cbtrus.org.