Childhood Cancer Data Initiative Program Support

National Cancer Institute, Frederick MD

Investigators

Abstract

The Childhood Cancer Data Initiative (CCDI) is an NCI program which collects, analyzes, and shares data to address cancer in children, adolescents, and young adults. The initiative intends to integrate new and existing data sources into a broader research ecosystem. The objective of the CCDI is to ensure that data from each of the 16,000 children and adolescents diagnosed with cancer in the United States each year contributes to reducing the burden of this disease. The success of the CCDI is predicated upon many factors, including making use of comprehensive, well integrated information systems into which data will be collected, processed and harmonized, and from which they will be distributed. The information systems identified to support the CCDI include those within the Cancer Research Data Commons (CRDC) rubric and the Moonshot’s nascent National Cancer Data Ecosystem. The planning efforts for the CCDI require acknowledging the lessons learned from prior NCI systems holding cancer phenome and genome data, understanding modern architectures of research information systems capable of managing such data, and knowledge of the landscape of such systems currently in use and under development at NCI. A variety of subject matter expertise is needed to guide and support CCDI-related activities, including biomedical informatics expertise, clinical expertise in childhood and adolescent cancers, technical, and project management expertise to support CCDI efforts.