The Childhood Cancer Data Initiative (CCDI) developed the Pediatric, Adolescent, and Young Adult (AYA) Rare Cancer Initiative to advance our understanding of very rare childhood cancers and improve outcomes for patients with these cancers.

As part of this rare cancer initiative, the CCDI team met on July 29, 2024, to start creating its Rare Childhood Cancer Registry, which will contain core data on all rare cancer participants. The team’s work included a national strategy for studying children and AYAs with very rare cancers and an agreement on the Common Data Elements (CDEs) that you will use when you collect data from participants you enroll in the registry.

CBIIT Office of Data Sharing’s Branch Chief and Supervisory Health Scientist Administrator, Dr. Subhashini Jagu, stresses the importance of this meeting as a pivotal step in NCI’s mission to enhance data standardization and collaboration. Key points from the discussion include:

• using CCDI’s CDE IDs and NCI standard CDEs for consistency in data elements across studies.
• balancing the need for detailed data with patient privacy and ensuring researchers use and manage unique identifiers for patients across studies to avoid duplication.
• considering virtual clinical and molecular tumor board(s), including existing pediatric tumor boards, and establishing additional resources.
• addressing the need for genetic counseling to interpret results.

CCDI’s Pediatric AYA Initiative focuses on enhancing our understanding of rare cancers by leveraging standardized data collection and fostering community collaboration. This aims at improving outcomes for patients by integrating diverse data sources and driving research to uncover more effective treatments and interventions.

Visit the NCI CCDI webpage to learn more about how you will be able to access the data collected through this initiative.