Childhood cancer research has changed the odds for families in measurable ways. According to the National Cancer Institute, roughly 85% of children diagnosed with cancer today are alive at least five years after diagnosis – a figure that reflects decades of incremental gains built on clinical trials, genomic research, and coordinated data sharing across institutions.¹ That progress is also why long-term survivorship has become its own field of study: as more children survive, researchers are tracking the “late effects” that can emerge years after treatment ends, work carried out through long-running efforts like the Childhood Cancer Survivor Study, which has followed more than 14,000 survivors and thousands of their siblings since 1994.¹
At CURE Childhood Cancer, we see this research landscape from two angles at once: as funders who help make specific studies possible, and as the organization families turn to when they want to understand what the science actually means for their child. This page lays out where the research stands, in plain terms, and how it connects to the family support and precision medicine work happening right now.
Clinical Trials Remain the Engine of Progress
Most of the meaningful advances in curing childhood cancer have come through clinical trials, not incremental changes to existing protocols.² The Children’s Oncology Group (COG) – an NCI-funded network that includes nearly every center in the U.S. and Canada that treats children with cancer – runs about 100 active clinical trials at any given time.³ For common cancers like acute lymphoblastic leukemia (ALL), more than half of newly diagnosed children receive their initial care as part of a COG study, which means the clinical trial system isn’t a separate track from standard care. For many families, it is standard care.³
This matters for how families should think about a trial recommendation: it’s rarely an experimental long shot. It’s frequently the same infrastructure that has driven the survival-rate gains of the last several decades.
Genomic Research Is Reshaping What “Type” of Cancer Means
A major shift in pediatric oncology research over the past decade has been large-scale genomic sequencing of tumor samples. Programs like the NCI-funded TARGET initiative and the Gabriella Miller Kids First program have sequenced thousands of pediatric tumors, most sourced through COG member institutions and biobanks, to better understand the genetic drivers behind childhood cancers.³ Researchers are also focused specifically on fusion proteins, genetic abnormalities that drive many pediatric cancers but remain poorly understood at the biological level, through dedicated research consortia.⁴
This genomic work is the foundation of precision medicine. Understanding which mutations drive which cancers is what makes it possible to match a child’s specific tumor to a targeted therapy rather than a one-size-fits-all protocol. For more on how that translates into treatment decisions, see our precision medicine page.
Data Sharing Is Becoming Its Own Research Priority
Perhaps less visible to families, but increasingly central to the field, is the push to unify childhood cancer data across institutions. NCI’s Childhood Cancer Data Initiative (CCDI) is building infrastructure to gather data from every child, adolescent, and young adult diagnosed with a childhood cancer, regardless of where they’re treated, with the goal of creating a national strategy for faster diagnosis and better-informed treatment.⁵ The CCDI Hub now serves as an entry point for researchers to access tools that connect clinical care data with research data across NCI and partner institutions.⁵
For rare pediatric cancers in particular, where any single hospital may see only a handful of cases per year, this kind of pooled data isn’t a convenience. It is often the only way to generate a large enough sample to learn anything at all.
Where CURE Fits Into the Picture
CURE Childhood Cancer directs research funding toward studies and researchers working inside this exact ecosystem: clinical trials, genomic characterization, and the kind of rare-cancer research that depends on data sharing across institutions. Families who want to understand what a specific research advance might mean for their child’s treatment should always start that conversation with their care team. This page exists to make the broader research landscape less opaque, so that conversation starts from a place of understanding rather than confusion.
To learn how CURE funds research like this, visit our current research page. To understand how genomic findings translate into individualized treatment, see our precision medicine page.
Sources
- National Cancer Institute, Childhood Cancer Survivor Study: An Overview
- National Cancer Institute, Childhood Cancers
- National Cancer Institute, Making Transformative Advances Against Childhood Cancer: A Conversation with Dr. Doug Hawkins
- National Cancer Institute, Research on Childhood Cancers
- National Cancer Institute, Childhood Cancer Data Initiative (CCDI)
