Childhood cancer data initiative: Status report
Subhashini Jagu, Elaine R. Mardis, Mary Frances Wedekind, Brigitte C. Widemann, Rena K. Kingery, Samantha Lemke Gonzalez, Jack F. Shern, Gregory H. Reaman
Abstract
In March 2023, over 800 researchers, clinicians, patients, survivors, and advocates from the pediatric oncology community met to discuss the progress of the National Cancer Institute's Childhood Cancer Data Initiative. We present here the status of the initiative's efforts in building its data ecosystem and updates on key programs, especially the Molecular Characterization Initiative and the planned Coordinated National Initiative for Rare Cancers in Children and Young Adults. These activities aim to improve access to childhood cancer data, foster collaborations, facilitate integrative data analysis, and expand access to molecular characterization, ultimately leading to the development of innovative therapeutic approaches.