NAACCR Initiatives Supporting Pediatric and AYA Cancer Research

September is Childhood Cancer Awareness Month, a time to recognize the impact of pediatric, adolescent and young adult (AYA) cancers and to highlight the importance of high-quality data in advancing research and improving outcomes. NAACCR is proud to share several ongoing initiatives that support pediatric and AYA cancer surveillance and research.

The NAACCR Pediatric SSDI Working Group has been leading efforts to strengthen data collection for pediatric cancers through the development of a series of virtual training modules. These on-demand resources are designed to support cancer registrars in accurately capturing pediatric staging data elements for the new Pediatric Data Collection System (PDCS). We are excited to announce the release of two new trainings focused on CNS Tumors and Retinoblastoma. These, along with additional pediatric data collection tools, are available on the NAACCR Pediatric Resources webpage.

NAACCR will also participate in the upcoming NCI Data Jamboree (September 17–18, 2025), presenting a project on Survival Disparities among Children Diagnosed with Neuroblastoma Enrolled and Not Enrolled in COG Clinical Trials Using the NCCR Data Platform. This work underscores the value of registry data in identifying disparities and supporting equitable access to clinical research.

In addition, NAACCR continues to support international collaboration through a pilot study between the U.S. and the U.K. This project aims to:

• Demonstrate the ability to share cancer data using innovative, privacy-preserving methods
• Show that technology is not a barrier to secure international data collaboration
• Enhance the study of rare and ultra-rare pediatric tumors by leveraging novel privacy-enhancing technologies

Through these initiatives, NAACCR reaffirms its commitment to advancing high-quality data collection, fostering collaboration, and supporting research that will improve the lives of children and AYA patients affected by cancer.