publication date: Jul. 26, 2019
NCI convenes key players to build framework for data federation in childhood cancer
By Matthew Bin Han Ong
For three days next week, about 200 experts in childhood cancer research will meet in Washington, D.C., to discuss their vision for a national Childhood Cancer Data Initiative, a program that aims to consolidate big data in pediatric cancer.
The CCDI symposium is a culmination of NCI’s plans—with buy-in from academia, industry, and advocacy—to help develop a framework for a federation of pediatric cancer databases.
By connecting disparate repositories, a federated database is the ultimate silo-destroyer. To make this vision a reality, NCI is convening next week’s symposium to speed up discussion of:
Scientific and clinical research data needs,
Opportunities for developing a connected data infrastructure,
Ways to provide meaningful data sets for clinical care and associated research progress, and
Policies around collecting and sharing data to enhance pediatric cancer research.
The stakes in this project are even higher since a connected data infrastructure in childhood cancer would be designed to serve as a springboard for creating a comprehensive data federation in oncology.
NCI’s role through this initiative is not to build a data set, but to connect and expand the data sets that already exist, NCI officials said.
“The symposium is designed to create dialogue in the broad community around the issues and initiatives needed to make a difference in childhood cancer,” NCI Acting Director Douglas Lowy said to The Cancer Letter. “The goal is to gain a common understanding of the current issues and opportunities in childhood cancer research that can be addressed through enhanced data collection and maximum utilization of that data.”
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