Childhood Cancer Data Initiative Participant Index: Mapping Pediatric Cancer Data to Facilitate Cross-Study Integrated Analysis

PURPOSE: To facilitate integrated multimodal data analysis, it is critical to connect data from multiple sources to address multifaceted research questions, better understand disease biology and natural history, develop new therapies, and improve existing treatments. The Childhood Cancer Data Initiative (CCDI) Participant Index, an application programming interface, aims to address this challenge by providing a digital ID mapping and matching service which collects and cross-references all known IDs associated with a participant. METHODS: A variety of retrospective and prospective data collected through the CCDI Data Ecosystem equal or surpass the complexity of patient data systems in large health care organizations. The CCDI Data Ecosystem includes participant data collected under multiple protocols and at multiple sites, which often results in the same participant being associated with multiple IDs depending on the source, time, or other variables. CCDI is exploring ways to integrate diverse data types (such as genomic, proteomic, imaging, transcriptomic, clinical trial, and electronic health record data), collected over time and from different sources at the participant level, while ensuring privacy protection. RESULTS: This mapping allows researchers to access a more complete picture of a participant, even when data are collected at different time points, organizations, protocols, and consents. CONCLUSION: This facilitates the creation of a connected data ecosystem and promotes data reuse, which, in turn, can accelerate research and improve participant outcomes.