The Pediatric Cancer Data Commons (PCDC) is building the future of pediatric cancer research.

The PCDC is headquartered at the Center for Research Informatics (CRI) at the University of Chicago and works in collaboration with research institutions and consortia  throughout North America, Europe, and Japan. We bring together clinical, genomic, and imaging data from institutions around the world that are working alongside us to transform pediatric cancer research and outcomes. With other international leaders, we are working to develop and apply uniform data standards so that data collected from different sources can be combined, compared, and analyzed.

By harmonizing existing clinical research data and leading international efforts to standardize data collection, we are breaking down long-standing barriers that have held back advancements in research on rare diseases. Our aim is to enable new and meaningful discoveries about pediatric cancers that could not occur without a collaborative, consortium-based approach.

Cancer researchers are poised to make new discoveries thanks to a revolution in our ability to collect and analyze high-density genomic data. However, significant advancement in pediatric cancer research continues to be limited by the small number of patients in any given data source and a lack of available clinical data to study alongside genomic information. The rarity of pediatric cancers makes acquisition of sufficiently sized data sets a particular challenge for researchers. Data remain siloed in disease-specific databases, national and international registries, and institutional data warehouses, and data sharing can be cumbersome or even impossible due to a lack of common data standards.

Our Pediatric Cancer Data Commons offers a powerful solution by centralizing data from many disparate sources. The adoption of common data standards makes it possible for data to be shared easily and for different types of data — clinical, biospecimen, imaging, and genomic — to be connected and searchable in real time. An endeavor of this magnitude requires robust international partnerships, expertise in data standardization, close attention to data governance and regulatory requirements, and the ability to build and deploy effective tools for querying, accessing, and visualizing large amounts of data. The PCDC leverages University of Chicago expertise in clinical cancer research and the CRI’s robust data infrastructure and cutting-edge skills in application development to challenge how researchers think about the limitations of pediatric cancer data.

By collocating  previously siloed data types and sources, the PCDC is vastly improving the ability of researchers to study the causes, treatments, and long-term effects of pediatric cancer and to make meaningful contributions to scientific literature and clinical practice. Eventually, when consensus data standards are adopted by the medical community and applied prospectively as new trials are developed, the available data will be even more complete and robust, catalyzing even more pediatric cancer discoveries.