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

Résumé fourni par la source

Despite vast investments in data collection, generation, and sharing from childhood cancer studies, for example, Gabriella Miller Kids First Research Program, Childhood Cancer Data Initiative, and other efforts, secondary use of data remains a challenge especially for rare diseases. The National Cancer Institute (NCI) Office of Data Sharing (ODS) aimed to promote FAIR (Findable, Accessible, Interoperable, Reusable) data sharing practices to enhance data utility, accelerate discovery, and foster interdisciplinary collaboration. NCI ODS launched its inaugural Data Jamboree focusing on childhood cancer alongside its third Annual Symposium in September 2025. Over 120 participants with diverse backgrounds coalesced into 23 multidisciplinary teams to solve real-world problems in a collaborative setting. The Jamboree built a diverse pool of data users and catalyzed pediatric cancer research, with several project findings being prepared for publication. Moreover, key feedback and recommendations for areas of improvement were provided to NCI in real time. The event highlighted the power of team science, data sharing, use, and reuse to accelerate childhood cancer research and improve diagnostic and therapeutic outcomes.

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