NCCR Winter Feature

The NCCR Feature Winter Edition highlights the NCCR 2025 Accomplishments and promotes the release of the 2025 AACR Pediatric Cancer Progress Report.

2025 NCCR ACCOMPLISHMENTS

NCCR Data Platform Updates

Imagine having access to comprehensive cancer surveillance data for children, adolescents, and young adults all in one place—linked to real-world evidence that tells the complete story. That’s exactly what the NCCR Data Platform offers. This powerful resource combines population-based cancer registry data with multiple complementary sources, including demographic information from the U.S. Census Bureau, Children’s Oncology Group (COG) treatment data, medical claims, and pharmacy records.

In October 2024, the NCCR Data Platform became publicly available. Since its launch, 23 data requests, representing 15 unique projects, have been submitted. Eight projects have been approved, five are currently under review, and two declined.

In 2025, data from the NCCR Data Platform were used by researchers in conferences, presentations and publications. Among these efforts was a project titled, Survival Disparities among Children Diagnosed with Neuroblastoma Enrolled and Not Enrolled in COG Clinical Trials Using the NCCR Data Platform, that was developed for participation in the first NCI Office of Data Sharing (ODS) Data Jamboree. Additional details are included in the 2025 Fall NCCR Feature.

The NCI tracks all research outputs for public viewing on the Childhood Cancer Data Initiative (CCDI)-Supported Publications page. Your research could be next!

The first annual data refresh happened in October 2025. This refresh of population-based central cancer registry and linked real-world data incorporated data from 20 registries. Together, these registries represent approximately 53% of all U.S. children and AYA aged 0–39, based on 2020 U.S. population estimates. The update included new cases diagnoses through 2022, introduced new fields related to extent of disease, added medication classification information, and included updates to existing data elements (see Release Notes). In addition, the 2025 data refresh resulted in an 84% increase in the number of cases with linked medical and pharmacy claims available in the Data Platform. These updates mean richer, more detailed data for more sophisticated analyses.

The NCCR Data Platform isn’t slowing down. Upcoming enhancements include:

• New data connections to clinical systems and radiation oncology records.
• More registries joining the effort starting fall 2026.
• Seamless integration with other major datasets like dbGaP, making cross-platform research easier than ever.

This is your chance to work with one of the most comprehensive, linked cancer datasets ever assembled. The NCCR Data Platform gives researchers, clinicians, epidemiologists, and data scientists the tools to make discoveries that could transform pediatric and adolescent cancer care.

Stay tuned for more updates as the NCCR Data Platform continues to expand and evolve.

2025 NCCR data in SEER*Stat Updates

In September 2025, the 1997-2022 NCCR databases were released in SEER*Stat.

The NCCR database in SEER*Stat relies on the NAACCR CiNA data submissions, which results in some differences between the NCCR and SEER research databases due to differences in tumor reportability and submission dates. Researchers can conduct a variety of analyses in SEER*Stat, such as frequency and rate sessions and survival sessions, but they cannot view individual-level records. To protect the confidentiality of patients and rare diagnoses in this smaller population, geographic information is not available in the NCCR data, and statistics may only be calculated for all registries combined. Researchers must apply for access to the SEER Research Plus Data to use the NCCR database in SEER*Stat.

Researchers can use these data to spot patterns, track survival rates, and discover important health trends. The largest database for Frequency and Rate Sessions is the NCCR Incidence Data with 25 States and Seattle. It includes 1,608,472 cases diagnosed from 2001-2022 provided in the December 2024 NAACCR submission (2001-2022) and covers approximately 73% of the population aged 0-39 (based on 2022 U.S. populations).

The database for Survival Sessions is the NCCR Incidence Data with 23 States and Seattle. It includes 1,457,609 cases diagnosed from 2001-2022 provided in the December 2024 NAACCR submission (2001-2022) and covers approximately 66% of the population aged 0-39 (based on 2022 U.S. populations).

2025 NCCR*Explorer Updates

The NCCR*Explorer, a free, public platform for exploring cancer statistics, received several updates in September 2025. Whether you are studying the incidence or prevalence of specific cancer types or investigating how survival rates have changed over time, NCCR*Explorer provides key statistics and data visualizations to frame your research. This update uses data from NAACCR and SEER registry submissions through diagnosis year 2022. The dataset represents 76% of the U.S. population and includes 29 NCCR cancer registries.

New U.S. Complete Prevalence estimates for persons diagnosed with a childhood cancer (ages <20) reflect estimates for January 1, 2022. These estimates were calculated from SEER Program registries and projected to the entire U.S. using U.S. population estimates.

Recent trends in survival, 2000-2020 were added to the application. You can also track how 1- to 5-year relative survival rates have evolved over the past two decades based on advanced statistical modeling (JPSurv Joinpoint Survival Model).

The option to compare cancer sites was made available in the ‘Compare By’ control making it easier to compare rates for different cancer sites in plots and tables.

The longitudinal expansion of NCCR*Explorer—from 66% U.S. population coverage at launch in 2021 to the current 76%—demonstrates sustained growth in data completeness and registry participation, providing researchers with increasingly robust denominators for incidence, prevalence, and survival analyses.

Linkages

NCCR-VPR: completed! The NCCR combined PII file was completed. This file was then matched against the 27 VPR files provided by registries. This file underwent Match*Pro PPRL (Privacy Preserving Record Linkage) hashing and the resulting hashed keys were provided to the other 12 registries who were participating in the NCCR-VPR linkage via PPRL. All the cancers for the matching patients were gathered and incorporated into the NCCR combined data set. 12,611 cancers were gathered via this linkage. And to celebrate, the linkage will be updated based on the Nov-Dec 2025 NCCR submissions!

• COG: initiated! The PII from COG was received to start the linkage to obtain the Universal Specimen Identifier (USI). The NCCR combined PII file was matched against the COG file and manual review of the patient matches is ongoing. In other news, at the end of the year, the PII from CCRN was received to start the linkage to obtain address history. This matching has not yet started.
• PPCR (Radiation Consortium): completed! The NCCR combined PII file was matched against the PPCR update file. There were 2,399 matching PPCR records which were added to the database.
• Cancer Centers: ongoing. Data submitted by NCI-supported Cancer Centers were harmonized to common data elements (CDEs) within the NCI’s Cancer Data Standards Registry and Repository II (caDSR II) and mapping was reviewed and confirmed by our team of clinical experts. This linked data is planned for release through the NCCR Data Platform’s upcoming Radiation Oncology and Clinical Information Systems datasets along with other clinical data.
• Both PPCR and Cancer Center radiation oncology data were submitted by the registries in the latest NCCR submission. These data will be loaded in NCCR combined and provided to the NCCR Data platform.

NCCR PPRL (Privacy-Preserving Record Linkage) Updates

PPRL techniques can be used to identify and link records that refer to the same real-world entity across different data sources without revealing sensitive information. The core concept involves transforming identifying attributes (like names and dates of birth) into secure, irreversible codes called hashes or cryptographic tokens before they are shared or compared. By using these encoded values, a linkage system can find matches with high accuracy while ensuring that no human or system involved in the matching process can reconstruct the original PII.

In 2025, an article presenting the results of an evaluation of Match*Pro’s PPRL implementation was published. Researchers tested the software’s vulnerability to re-identification by applying a frequency analysis attack to a series of hashed data files that were created by hashing a large voter registration database and concluded that the re-identification risk is remarkably low and demonstrated that the risk further diminishes as the size of the dataset increases. The results of the analysis provided the statistical evidence required for an expert to certify that Match*Pro meets HIPAA’s “Expert Determination” standard for de-identification. This article was published in the Journal of the American Medical Informatics Association.

Congratulations to all the authors, including Dr. Murat Kantarcioglu, Will Howe, and Dr Benmei Liu!

Data Quality Achievements

NCCR team performed extensive data quality assessments including:

• Conducted completeness analysis of submitted data items and evaluation of data items required for survival analysis.
• Convened and collaborated with clinical experts to recommend updates to the classification of pediatric site and histology combinations, offering NCCR users a standardized and modernized classification system for pediatric cancers.
• Provided analysis support and expertise to IMS and NCI for review the quality of NCCR databases to update NCCR*Explorer and NCCR data in SEER*Stat (2025 update).

Education Achievements

NCCR team coordinated educational opportunities:

• The new NAACCR Pediatric Resources web page to aid registrars in collecting high-quality pediatric cancer data.
• The Pediatric Stage Training Series as part of the NAACCR Learning Management System, this free series currently includes five individual training modules for cancer registrars.

AACR Pediatric Cancer Progress Report

Released on December 4, 2025, the American Association for Cancer Research Pediatric Cancer Progress Report 2025 provides a timely and in-depth overview of progress in pediatric cancer research and care.

The report highlights major scientific and clinical advances that have improved survival and quality of life for children and adolescents with cancer, while also documenting the challenges that continue to limit progress for many patients. It presents up-to-date data on pediatric cancer incidence, mortality, and survivorship, and illustrates how research breakthroughs translate into real-world impact. Importantly, the report calls for sustained and increased federal investment, continued innovation in research, and broader access to clinical trials and novel therapies to accelerate progress for all children with cancer.

You can download a PDF copy here.

Mark your Calendar

February 24, 2026 – NCI ODS Data Jamboree Seminar Series. Register here. This seminar will feature projects conducted at last fall’s Data Jamboree, highlighting uses of the National Childhood Cancer Registry’s Data Platform.

The 2026 NAACCR Annual Conference (virtual) — June 23-25 — will exhibit a session titled, NCCR Research Use Cases. To register, please go to the conference website.