It Takes a Village: Recent Article Shows Strength of Community in Addressing Childhood Cancer
NCI and CBIIT staff, as well as experts in childhood cancer research, recently published an article, “Cancer Informatics for Cancer Centers (CI4CC): Scientific Drivers for Informatics, Data Science, and Care in Pediatric, Adolescent, and Young Adult (AYA) Cancer,” in JCO Cancer Clinical Informatics. The NCI authors included:
- Dr. Tony Kerlavage, CBIIT director;
- Dr. Jaime Guidry Auvil, Office of Data Sharing director;
- Dr. Karlyne Reilly, Rare Tumors Initiative director, Center for Cancer Research;
- Dr. Lynne Penberthy, Surveillance Research Program associate director; and
- Dr. Ned Sharpless, NCI director.
The article summarizes the Fall 2020 CI4CC Symposium and showcases the scope of work underway within the pediatric and AYA cancer community related to research and clinical care, as well as advocacy efforts and health services research. Central to these discussions was identifying how data science and informatics are helping to support these initiatives and how data and technology can be leveraged for even greater impact in the future.
CI4CC is a nonprofit organization designed to provide a national forum to informatics leaders in community and academic cancer centers around the world, with special emphasis on large community cancer programs and the 70 centers funded by NCI.
NCI's Childhood Cancer Data Initiative aims to learn from every child with cancer by making that data available to all researchers. NCI is working with the community to develop a set of strategies to:
- gather data and report on every patient and survivor (and their families) diagnosed with childhood cancers in the United States.
- establish a platform to federate, aggregate, and integrate data from all relevant NCI-supported and community-based childhood/AYA data resources.
- offer pertinent clinical and molecular characterization to more precisely treat every child with cancer.
The old adage that it takes a village to raise a child resonates clearly in the research being conducted within the childhood cancer data field. Only in this case it will take the strength of that community—of researchers, private-public partnerships, and patients and their families—to find more effective ways to preserve the lives of all children impacted by cancer and cancer-related diseases.
As noted by Dr. Kerlavage and his colleagues, “Collaborative team science and broad, open access to research and clinical care data are crucial to building enough power to drive innovation and find answers to improve treatments for young patients and survivors.”