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Washington, D.C.—Each year, the parents of 16,000 children in the United States will get the devastating news that their child has cancer. Not all of those children will survive, and the ones who do often suffer serious side effects later on from treatments. What if every piece of data on these patients—from their birth records to genetic tests on their tumors, the drugs they receive, and their subsequent health records—went into a single secure database that researchers could mine to improve pediatric cancer care?
That was one big idea that emerged from a 3-day meeting here last week, where some 200 researchers and patient advocates met to brainstorm about President Donald Trump’s proposal, included in his January State of the Union address, to spend $500 million over 10 years on childhood cancer research. The Childhood Cancer Data Initiative (CCDI), as the National Cancer Institute (NCI) has dubbed it, could have many payoffs, such as devising less harsh treatments and figuring out why 10% of childhood leukemia patients don’t respond to treatments or relapse, said NCI acting director Doug Lowy. And for very rare cancers with no treatments, pooling such data on cases is essential for researchers to draw firm conclusions. But if sharing data “were easy, we would have already done it,” Lowy said.
Problem - Data - Children - Adults - Cancer
The problem is that data on children and young adults with cancer are stored in myriad separate, incompatible databases—including state cancer registries, tumor sequencing projects for specific cancers, and the giant NCI Children’s Oncology Group (COG), which runs clinical trials. Other valuable data take effort to use: a patient’s medical records, for example, often must be typed into a database by hand, a time-consuming chore. And imaging data need to be annotated to be useful for analyses across many patients.
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