Pediatric Cancer Data Commons More than 15,000 children under the age of 20 are diagnosed with cancer each year in the United States, according to the American Cancer Society. Though cancer remains the leading cause of death among children past infancy, child- hood cancers account for less than one percent of all cancers diag- nosed each year. In comparison, more than 1.6 million adults receive cancer diagnoses annually. The paucity of pediatric can- cer cases has created barriers for researchers. Fewer cases mean fewer technological advancements in treatment driven by synthesizing “big data.” And, the pediatric data that do exist are often hard for sci- entists to access and analyze. But, University of Chicago researchers are hoping to shift this paradigm by creating a com- prehensive Pediatric Cancer Data Commons (PCDC) that centralizes data and makes it easily accessible to the entire research community. “We’ve always had the problem in pediatric cancer, that there are just not enough data to study,” said Sam Volchenboum, MD, PhD, associate professor of pediat- rics and director of the University of Chicago Center for Research Informatics (CRI). Many advances in pediatric cancers, Volchenboum added, have relied on data from large consortium clinical trials, such as those out of the Children’s Oncology Group (COG). The COG is supported by the National Cancer Institute (NCI), and is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. “It is a way to collect all these patients together,” Volchenboum said. “But, the data still remain sequestered in Excel spreadsheets or in peo- ples’ computers.” In 2004, recognizing a need for centralized data, researchers from North America, Europe, Australia and Japan formed the International Neuroblastoma Risk Group (INRG) Task Force, co-chaired by Susan Cohn, MD, professor of pediatrics. This task force gathered and stan- dardized data from 8,800 patients with neuroblastoma—a cancer that starts in the nerve cells of developing embryos—and contin- ued to add data during the follow- ing decade. But, despite their efforts, the data still remained in a large spread- sheet that required a lengthy approval process to access. Furthermore, the clinical data were not linked to patient genomic data, leaving researchers with an incomplete picture. And, research- ers could not easily determine the availability of patient biospecimens housed at the COG biorepository in Columbus, Ohio. In 2012, Volchenboum and Cohn set out to overcome these limitations by using philanthropic funding from The William Guy Forbeck Research Foundation to take the INRG neuroblastoma data and turn it into a “living” database housed on a searchable website. This allowed researchers to easily search for the information they needed, including biospeci- men availability. “The INRG data are available to investigators from around the “The INRG data are available to investigators from around the world for research studies. Many of these studies evaluated small patient cohorts and the analysis would not have been possible without the large numbers of patients included in the INRG Data Commons.” — Susan Cohn, MD 28 Powered by Innovation