NCCR Fall Feature

The NCCR Fall Feature highlights key advancements and initiatives within the NCCR community, including highlights on the inaugural Data Jamboree, new study on clinical trial enrollment disparity using NCCR data, recent updates to NCCR*Explorer and SEER*Stat tools, and important upcoming deadline for NCCR registry participants Call for Data.

Data Jamboree: Enhancing Childhood Cancer Data Sharing and Utility

The National Cancer Institute’s (NCI) Office of Data Sharing hosted its inaugural Data Jamboree from September 29–30, 2025, in Maryland, with both in-person and virtual participation options. This landmark event was created to expand the use, accessibility, and scientific value of pediatric and adolescent and young adult (AYA) cancer data by fostering collaboration and hands-on exploration among researchers, data scientists, and public health professionals.

Over the past two decades, national programs such as the NIH’s Gabriela Miller Kids First Program and NCI’s Therapeutically Applicable Research to Generate Effective Treatments (TARGET) and Childhood Cancer Data Initiative (CCDI) have made significant strides in generating and sharing childhood cancer data. However, these datasets remain underused due to ongoing challenges in locating relevant resources, building cancer-specific cohorts, and integrating data from multiple platforms. The Data Jamboree was designed specifically to address these barriers, increase visibility of existing resources, and encourage innovative use of available datasets.

Purpose and Goals of the Jamboree

The event gathered multidisciplinary teams to:

• Explore existing pediatric and AYA cancer datasets
• Develop solutions to technical barriers in data access and interoperability
• Promote collaborative research using shared data resources
• Generate actionable ideas to enhance data utility, quality, and impact

A total of 23 teams were selected and organized into seven thematic areas:

1. Enhancing data interoperability
2. Building specific cohorts and/or visualization tools
3. Development, refinement or validation of analysis tools, pipelines or artificial intelligence and machine learning (AI/ML) algorithms
4. Development of tutorial and educational tools and creative uses of data
5. Assessing and improving data quality
6. Integrating and analyzing data
7. Development of a detailed workbook of pain points, areas for improvement and technical documentation

NAACCR Participation and Project Focus

NAACCR staff Dr. Fernanda Michels and Stephanie Hill, in collaboration with Dr. Gonçalo Forjaz (Westat), Dr. Eric Durbin (Kentucky Cancer Registry), and Dr. Gerardo Lazaro (U.S. Department of Health and Human Services), submitted a project titled: “Survival Disparities among Children Diagnosed with Neuroblastoma Enrolled and Not Enrolled in COG Clinical Trials Using the NCCR Data Platform.”

Our team was selected to participate within the theme of “building specific cohorts and/or visualization tools.” In the weeks leading up to the event, teams engaged in planning sessions to review tools, align objectives, and prepare for hands-on work.

Event Highlights

• Day 1 began with opening remarks from NCI leadership, including Dr. Jaime Guidry Auvil and Dr. Emily Boja, followed by team breakout sessions. Our team spent the day conducting an in-depth exploration of the NCCR Data Platform and launching our preliminary analyses.
• Day 2 focused on finalizing analyses, refining findings, and preparing presentations. In the afternoon, teams presented key insights during the NCI Office of Data Sharing’s 3rd Annual Symposium.

A Collaborative Success

The Data Jamboree provided an inspiring and productive environment that encouraged creativity and teamwork. The organization was exceptional, and the event facilitated valuable networking with leading experts across cancer research, informatics, and public health. Participants left with new insights, potential collaborations, and a renewed commitment to increasing the impact of pediatric and AYA cancer data.

Participation in this event emphasized the vital role of the NCCR Data Platform in supporting research that can lead to improved outcomes and reduced disparities in childhood cancer.

New Study Highlights Enrollment Disparities in Children’s Oncology Group (COG) Trials Using NCCR Data

A new study published in the Journal of the National Cancer Institute (JNCI) investigates factors associated with disparities in enrollment in Children’s Oncology Group (COG) clinical trials. By linking data from the National Childhood Cancer Registry (NCCR) with COG trial records, researchers identified populations of children with cancer who may be underrepresented in these trials and examined the drivers of enrollment gaps. To read an article about this study published in The Narrative, click here.

New Release! Updates to NCCR*Explorer and NCCR Data in SEER*Stat!

The NCCR*Explorer and NCCR Data in SEER*Stat were updated on September 24, 2025!

NCCR*Explorer now includes:

• Incidence and survival estimates through diagnosis year 2022, based on NAACCR and SEER registry submissions (covering 76% of the U.S. population across 29 registries)
• Updated complete prevalence estimates for childhood cancers (as of January 1, 2022)
• Recent survival trends (2000–2020), calculated using the JPSurv model
• The option to compare cancer sites, now available under “Compare By.”

NCCR Data in SEER*Stat

• The 2001–2022 NCCR databases are now available in Frequency, Rate, and Survival
• Additional database details and documentation are provided on the NCCR December 2024 Submission

Mark your Calendar

December 2, 2025: NCCR Call for data. **Applies only to registries participating in the NCCR**