Winter 2023 NAACCR Narrative Leave a comment

Fernanda Silva Michels, MSc, PhD, CTR

Program Manager of Data Quality and Integration
[email protected]



2022 was a year of exciting growth and development for the National Childhood Cancer Registry! As we kick off the new year, the NCCR project staff at NCI and NAACCR would like to highlight just a few of the many accomplishments brought about by the collective efforts of everyone involved in making the NCCR a successful reality.

This year marked the first coordinated NCCR call for data, with 24 central cancer registries submitting full NCCR files as part of the annual SEER and NAACCR calls for data. The NCCR now covers more than two-thirds of all U.S. children, adolescents, and young adults ages 0-39, with plans to expand further in 2023.

We also saw the completion of the first linkage between the NCCR and the Virtual Pooled Registry (VPR), matching the NCCR patients (age 0-39) against the VPR files (all ages) from NCCR registries plus nine VPR-only registries. Subsequent cancers will be added to the NCCR database to form a complete picture of the patient’s cancer history. NAACCR’s Interstate Case Ownership Task force (a subgroup of the NAACCR Standardization a Registry Development Steering Committee) has been developing standard rules for addressing duplicate cases between states, and we plan to test these rules using duplicate cancers identified through the NCCR-VPR match. This process will observe patient confidentiality protocols and will require the involvement of the registries. More information will be provided once the cancer matching has been completed.

Great strides have been made in developing mechanisms to make data available to end users through several avenues, including an NCCR version of SEER*Stat and an NCI cloud-based data platform. The NCCR Data Platform will enable researchers to perform cohort discovery and to explore data available at an aggre­gate level. The platform will also support requesting access to patient-level data through a robust au­thentication, authorization and review process including, where necessary, IRB review and approval.

HemOnc.Org is a one-stop shop for detailed information about oncology treatment regimens with links to relevant literature for evidence-based therapy. Practicing clinicians from various oncology specialties are the editors for the content. While HemOnc.Org is not an accredited guidelines entity, they do offer valuable information on trial and medication abbreviations and names, dosing, evidence, and therapy options for patients, clinicians, pharmacists, and researchers. Until recently, pediatric regimens and their evidence were not well documented. SEER and the NCCR have funded a team of pediatric oncologists to better describe pediatric oncology therapies, add missing details to existing regimens, add missing guideline-recommended regimens and protocols, and perform landscape analysis for missing historic regimens and protocols. The HemOnc.Org team has re-organized information to make it easier to find pediatric oncology regimens by cancer, created new pages for different cancers, and added more detail about regimens.

The Pediatric Proton and Photon Consortium Registry (PPCR) linkage project enabled a linkage between NCCR registries and the PPCR for eventual deposition into the NCCR and to identify patients who live in the US and are treated with radiotherapy at PPCR sites (around 2,700 patients treated by approximately 20 PPCR sites). The patient-level portion of the linkage is complete, with additional work ongoing into the new year. Look for more information and linkage results later this year.

The NCCR is envisioned as a connected data infrastructure to enable sharing of childhood cancer data, not just from central registries, but from myriad data sources. Twelve NCI-designated Cancer Centers were awarded supplemental NCI funds to aggregate, integrate, and submit existing data beyond the traditional cancer abstract, with the goal of expanding that infrastructure and ultimately supporting improved understanding of childhood cancer. In 2022, nine of the 12 NCI-designated Cancer Centers completed their data submissions to the NCCR.

Members of the NCCR Data Quality and Metadata Working Groups collaborated with NCI on a structured approach to developing new Site-Specific Data Items (SSDIs) for generating pediatric cancer stage according to the Toronto Staging Guidelines. The recommended SSDIs have been collated into one document titled “Implementation Guide for Toronto Staging.” The proposed new data items are based directly on Toronto Staging, and many are already collected by CTRs at pediatric facilities, but in a non-standardized way. Field test has been happening in the Kentucky Cancer Registry, and the SSDIs have been proposed for implementation in 2024.

NCCR*Explorer, the interactive web application for statistics based on NCCR data that was first launched in 2021, received some significant updates in 2022:

  • A new feature was added to the Recent Trends graph for Incidence statistics. An information panel can now be displayed next to the graph that shows the Annual Percent Change (APC) estimates for the trend lines shown on the graph. To show the APCs, check the ‘View APC’ checkbox located above the graph.
  • Data update to the NCCR*Explorer application including incidence and survival estimates based on North American Association of Central Cancer Registries (NAACCR) and Surveillance, Epidemiology, and End Results (SEER) Program registry submissions through diagnosis year 2019.
  • The dataset used for this release represents 69% of the U.S. population and includes the following 24 NCCR cancer registries: California (3 registries: Greater Bay, Greater California, Los Angeles), Connecticut, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Kentucky, Louisiana, Massachusetts, Michigan, New Jersey, New Mexico, New York, Ohio, Pennsylvania, Seattle (Puget Sound), Tennessee, Texas, Utah, Wisconsin.

And finally, the NCCR is drawing international attention, with presentations at the UICC World Cancer Congress, in Geneva, Switzerland, and at the IACR 2022 Virtual Conference.

We wish to extend a heartfelt thank you to all those who have worked so diligently to make 2022 a success for the NCCR, and we look forward to working with you in the coming year as we continue to realize the full potential of this innovative initiative!




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