THE CHILDHOOD CANCER DATA INITIATIVE (CCDI): RESEARCH MOLECULAR CHARACTERIZATION

Investigators

Abstract

The National Cancer Institute (NCI)’s Childhood Cancer Data Initiative (CCDI) is a flagship initiative that focuses on the critical need to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults (AYAs). The data initiative supports childhood cancer research and aims to facilitate cancer researchers to learn from each of the approximately 16,000 children and adolescents diagnosed with cancer in the United States each year. The CCDI foundational goals are to: • gather data (existing and new) from every child, adolescent, and young adult diagnosed with childhood cancer • create a national strategy of appropriate clinical and research molecular characterization to speed diagnosis and inform treatment for all types of childhood cancers • develop a platform that will bring together clinical care and research data that will improve preventive measures, treatment, quality of life, and survivorship for childhood cancers To fulfill these goals, CCDI launched the Molecular Characterization Initiative (MCI) that enrolls pediatric cancer patients using Children's Oncology Group (COG)'s Project:Every Child (PEC) protocol in 2022. As a result, clinical-grade (CLIA-certified) molecular test results have been returned to thousands of patients and treating physicians within two weeks to help refine diagnosis and inform treatments. By leveraging the residual specimens from patients that have consented for research, CCDI added a complementary research characterization pipeline to clinical sequencing. This Research Molecular Characterization project aims to generate additional multi-dimensional molecular data including but not limited to deep whole genome sequencing, RNA sequencing, methyl sequencing, proteomics, and metabolomics using state-of-the-art multi-omics technologies and methods. These rich datasets delivered to the CCDI data ecosystem will enable researchers to learn from every child’s data and improve the understanding of the molecular underpinnings of disease biology.