publication date: Dec. 4, 2020

Federate the data: NCI produces master plan for the Childhood Cancer Data Initiative

By Matthew Bin Han Ong

NCI is using a hub-and-spoke structure to engineer an ambitious data federation for pediatric cancers—which, if done right, is anticipated to become the gold standard for a new generation of comprehensive cancer databases.

The Childhood Cancer Data Initiative, which is now on track to be developed over 10 years, is envisioned to gather data from every child, adolescent, and young adult diagnosed with cancer in the United States, regardless of where they receive care.

“The CCDI is a critical new attempt to try to aggregate and understand and develop a broad series of types of data—clinical data, treatment data outcome, molecular biospecimen data—in a longitudinal fashion, from both individual children and young adults, as well as populations of children and young adults to try to share this data in ways that will improve treatment, quality of life, and survivorship for all children with cancer,” NCI Deputy Director Jim Doroshow said Dec. 2 in a virtual meeting of the National Cancer Advisory Board and the Board of Scientific Advisors.

The initiative, first announced by NCI in March 2019, was the institute’s response to the White House’s plan to spend $500 million on pediatric cancer research (The Cancer Letter, Feb. 8, 2019). Congress has appropriated $50 million in fiscal year 2020 for the CCDI, and is expected to continue to do so for another nine years.

“We envision this to be a very high grade dataset that will be useful for real cutting-edge translation and basic research,” NCI Director Ned Sharpless said at the time (The Cancer Letter, March 8, 2019). “This … Continue reading Federate the data: NCI produces master plan for the Childhood Cancer Data Initiative

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