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Cancer Registry to Link Genomic, Outcomes Data

November 8, 2015
by David Raths
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AACR Project GENIE designed to power clinical decision making and advance clinical and translational research

The American Association for Cancer Research (AACR) has launched a registry initiative designed to aggregate participants’ clinical-grade genomic sequencing data to improve patient treatment decisions and catalyze clinical and translational research.

Known as AACR Project GENIE (Genomics, Evidence, Neoplasia, Information, Exchange), the initial phase of the project is being conducted in partnership with seven global leaders in genomic sequencing for clinical utility, as well as two informatics partners.

“Numerous factors are driving an increase in the amount of genomic data available for analysis; however, these data are typically insufficient in number or lack the necessary clinical outcomes data to be clinically meaningful,” said Charles Sawyers, M.D., AACR Project GENIE Steering Committee chairperson, 2015-2017, in a prepared statement. “Thus, to effectively benefit patients, the genomic and clinical outcomes data from as many institutions as is practical should be combined through a data-sharing initiative, such as AACR Project GENIE.”

The project hopes to accomplish its goals by pooling existing and ongoing sequencing data from the participating institutions into a single registry and linking these data with select longitudinal clinical outcomes.

The founding members and Phase One participants are the Center for Personalized Cancer Treatment in Utrecht, the Netherlands; Dana-Farber Cancer Institute in Boston; Institut Gustave Roussy in Villejuif, France; Johns Hopkins University's Sidney Kimmel Comprehensive Cancer Center in Baltimore; Memorial Sloan Kettering Cancer Center in New York; Princess Margaret Cancer Centre in Toronto; and Vanderbilt-Ingram Cancer Center in Nashville, Tenn. The informatics partners are Seattle-based Sage Bionetworks and New YOrk-based cBioPortal.

The Project GENIE registry already contains more than 17,000 genomic records, according to AACR. This registry is enriched in late-stage cancers and contains only clinical-grade sequencing data on which clinical decisions have been made. The number of genomic records in the Project GENIE registry will continue to grow as new patients are seen at each participating institution and subsequently added to the registry.

The approach to data harmonization is such that each participating organization can continue to operate how it best sees fit while simultaneously contributing its data to the project. In this manner, future participants can and will be easily added once the pilot phase of the project is concluded.

“Data-sharing projects are crucial because they connect data producers, mainly doctors from hospitals, and data analysts who are bioinformaticians and biologists,” said Fabrice André, M.D., Ph.D., professor, Institut Gustave Roussy, and AACR Project GENIE Steering Committee member, in a prepared statement. “The beauty of data-sharing projects is that they are universal and allow anyone in the world to work on biology projects based on a common data set.”

All project data will be made open-access following defined periods of project exclusivity, and the initial genomic data set will be publicly available on Nov. 6, 2016.