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The New Childhood Cancer Registry Staging Program- What It Is

The Childhood Cancer Registry Staging Program is a new national effort—led by the National Cancer Institute’s SEER Program and the North American Association of Central Cancer Registries (NAACCR)—to collect standardized stage-at-diagnosis data for all pediatric cancers reported to U.S. cancer registries.

It’s based on the internationally recognized Toronto Childhood Cancer Staging Guidelines, adapted for use in U.S. population-based registries. Beginning with cases diagnosed in 2025, this system introduces new data elements and definitions that allow every childhood cancer to be staged consistently across the country.

Why It Matters

Until now, most U.S. cancer registries lacked reliable or uniform data on how advanced a child’s cancer was at diagnosis. This made it difficult to:

  • Compare outcomes by stage across states or institutions.
  • Evaluate early detection or diagnostic delays.
  • Track survival improvements over time.
  • Identify disparities in access to timely care.

By implementing a consistent staging framework, the new program will:

  • Improve national data quality and comparability for all childhood cancers.
  • Enable earlier diagnosis efforts by showing where and when cancers are being detected.
  • Guide policy and funding decisions with more accurate evidence.
  • Strengthen research and registry collaborations across the U.S. and internationally.
  • Empower advocacy groups—including CAC2 members—to use data more effectively in awareness and policy initiatives.

How It Works

  • Registrars at hospitals and state cancer registries will code new pediatric cancer cases using SEER’s Pediatric Data Collection System (PDCS).
  • The data capture stage at diagnosis (localized, regional, distant) and other key tumor details, depending on cancer type.
  • Registries will report this data to SEER, NAACCR, and CDC’s National Program of Cancer Registries (NPCR) for national aggregation and analysis.
  • Data will begin to appear in public reports and research databases over the next several years.

Why It’s a Milestone

This is the first time in U.S. history that childhood cancers will have a unified, national staging standard within population-based cancer registries. It represents a critical step toward evidence-driven advocacy, allowing the childhood cancer community to speak with precision about trends, disparities, and progress.

In short, it transforms childhood cancer data from what happened to why it happened—and that insight can directly inform better outcomes for children everywhere.

Resources to Explore

Here are a few U.S.-based resources supporting the new national staging initiative and ongoing data collaborations in pediatric cancer:

NCI SEER Pediatric Staging Program – Official schemas and training tools for the new registry staging system. https://seer.cancer.gov/tools/staging/pediatric/

NAACCR Pediatric Cancer Resources – U.S. registry standards, data dictionaries, and implementation webinars. https://www.naaccr.org/pediatric-resources/

CDC National Program of Cancer Registries (NPCR) – Federal program supporting state registries and the STAR Project for pediatric and AYA data. https://www.cdc.gov/national-program-cancer-registries/about/pediatric-young-adult-cancer.html

Childhood Cancer Data Initiative (CCDI) – U.S. federal initiative linking registry, genomic, and clinical data to accelerate pediatric cancer research. https://childhoodcancerdata.cancer.gov/