Sustainable Community-Wide Model to Enhance Cancer Data Usage and Utility

Area of Science:

• Pediatric Oncology
• Bioinformatics
• Data Science

Background:

• Secondary data use in childhood cancer research, particularly for rare diseases, faces significant challenges despite data collection investments.
• The National Cancer Institute (NCI) Office of Data Sharing (ODS) seeks to improve data utility and accelerate discovery through FAIR data principles.
• Childhood cancer data initiatives aim to foster interdisciplinary collaboration and enhance research outcomes.

Purpose of the Study:

• To address challenges in secondary data use for childhood cancer research.
• To promote FAIR (Findable, Accessible, Interoperable, Reusable) data sharing practices.
• To catalyze pediatric cancer research through collaborative data use.

Main Methods:

• The NCI Office of Data Sharing (ODS) organized its inaugural Data Jamboree in September 2025, focusing on childhood cancer.
• Over 120 participants from diverse backgrounds formed 23 multidisciplinary teams to tackle real-world problems.
• The event integrated with the third Annual Symposium to foster collaboration and data sharing.

Main Results:

• The Data Jamboree successfully engaged a diverse group of data users, stimulating pediatric cancer research.
• Several projects initiated during the Jamboree are being prepared for publication, demonstrating tangible outcomes.
• Real-time feedback and recommendations for improving NCI data sharing practices were gathered.

Conclusions:

• Team science and data sharing are powerful accelerators for childhood cancer research.
• Enhanced data utility and reuse can significantly improve diagnostic and therapeutic outcomes for pediatric cancer.
• The Data Jamboree model effectively promotes collaboration and addresses data sharing challenges.