The Pediatric Cancer Data Commons (PCDC) Consortium brings together data commons development work in seven pediatric cancers under one common core data dictionary and consensus-based governance structure. In autumn 2019, with funding from St. Baldrick’s Foundation, the PCDC Consortium was created to formally unite the existing disease-specific consortia and data commons for neuroblastoma, soft tissue sarcoma, acute myeloid leukemia, acute lymphoblastic leukemia, germ cell tumors, bone tumors, and Hodgkin lymphoma.
Throughout the PCDC’s history, the progress of each individual consortium and commons has always contributed to that of others, since each is built using similar technological underpinnings and consensus-based governance processes. The PCDC Consortium creates a more formal structure to integrate this work, further facilitating the development of the commons and allowing us to work in alignment with the National Cancer Institute (NCI)’s prospective vision for the nationwide Cancer Research Data Commons framework.
The development of a common core data dictionary and common governance structure is now in progress, benefiting from the expertise of all seven groups. Over the next three years, we will harmonize data from each disease group to the consensus data model, build cohort discovery and data visualization tools, and extend our work to the larger research community through outreach and education. This project will enable innovative cross-disease research as well as set a standard for future cancer data commons endeavors.
If you are a physician or researcher who would like to learn more and potentially become involved in a work group, please contact us.
University of Chicago
Children’s Oncology Group
Nemours/Alfred I. duPont Hospital for Children
Dana-Farber Cancer Institute
Roswell Park Comprehensive Cancer Center
Seattle Children’s Hospital
Tufts University Medical Center
University of California, San Francisco
University of Florida
University of Southern California
University of Texas Southwestern Medical Center
Data Dictionary and Data Model: Informed by the current state of pediatric cancer clinical data collection, we are working with stakeholders to ballot a consensus data dictionary and data model that can be used for all data in the PCDC.
Harmonization: Once our common core data dictionary and data model has been established, our team will harmonize completed clinical trials data for each disease group’s studies according to the accepted data model and upload these data into the PCDC. All data will conform to FAIR data principles (findable, accessible, interoperable, reusable), and our data standards will be available to the wider research community.
Data Governance: In order to ensure data quality and guide the contribution, access, and use of data with agreement from all cooperative group representatives, we are developing streamlined consortium and data governance guidance for both individual disease groups and the PCDC Consortium as a whole.
Data Commons: We will build a technological infrastructure for our data commons that aligns with the NCI’s prospective vision for the Cancer Research Data Commons and enables potential connection to other non-clinical sources of data. The commons will integrate visualizations and tools to help researchers explore and request data.
Engagement: The PCDC Consortium will engage the wider research community through education and outreach in order to gather input from key stakeholders to guide the development of the commons; integrate additional cooperative groups; and provide assistance to those using the commons, our data dictionary, or our data model as resources.