American Association For Cancer Research Launches Genetic Data Sharing Program

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The American Association for Cancer Research announces a new collaborative research project that will combine raw genetic data and outcomes reports from seven major cancer hospitals across North American and Europe. The new initiative, called AACR Project Genomics, Evidence, Neoplasia, Information, and Exchange – or Project GENIE, was announced this past Friday. The founding research partners include US institutions Dana Farber Cancer Institute, Johns Hopkins University’s Sidney Kimmel Comprehensive Cancer Center, Memorial Sloan Kettering Cancer Center, and Vanderbilt-Ingram Cancer Center. Toronto-based Princess Margaret Cancer Center, along with Netherlands-based Center For Personalized Cancer Treatment, and France-based Institut Gustave Roussy round out the list of participating cancer centers. Sage Bionetworks of Seattle and cBioPortal of New York are stepping up as informatics partners to facilitate the data sharing efforts that underpin the project’s goals.

AACR has coordinated this partnership to provide the oncology community a central repository to store and analyze tumor mutation data. Each year, thousands of patients have tumors genetically analyzed in hopes that an ideal treatment plan will emerge from the data. Unfortunately, this is typically not the outcome of such tests. While evidence continues to mount, correlating specific tumor DNA mutations with effective treatment plans, most mutations do not have evidence linking them to a specific treatment plan. In response to this lack of understanding, AACR is calling on research centers to begin submitting the results of these screening tests so that a single tumor registry can be developed. The hope is that the resulting data set will allow researchers to unlock new links between tumor mutations and effective drug treatment plans. Today, results from the genetic sequencing tests done at prestigious cancer centers are stored in data silos within the organization, where local scientists can use them to for their own research projects, but where they are largely unavailable to the general scientific community.

Project GENIE will start as a closed-system, in which the seven founding members will work together to establish a central registry of genetic and outcome data that can be queried to establish links between mutations and drug treatments. To date, the fledgling registry holds data from 15,000 genetic samples. Once the platform is ready to scale, membership will be extended beyond these initial seven organizations, and providers from across the globe will be able to contribute tumor mutation data, while researchers pour over this information to help guide the development of new treatment protocols.


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