publication date: Aug. 4, 2017
AACR’s Project GENIE about to release second dataset, creating the largest publicly available genomic database
By Matthew Bin Han Ong
Project GENIE, a publicly available genomic data repository created and run by the American Association for Cancer Research, has amassed 18,804 de-identified records, and is on track to release another large dataset early this fall.
Launched in 2015, Project GENIE, short for the AACR Project Genomics Evidence Neoplasia Information Exchange, is a multi-phase, multi-year international data-sharing initiative that seeks to catalyze precision oncology through the development of a regulatory-grade registry.
As a publicly available database, GENIE is different from other clinical decision-making programs, said Charles Sawyers, founder of Project GENIE, former president of AACR, and chair of the Human Oncology and Pathogenesis Program at Memorial Sloan Kettering Cancer Center. Other prominent bioinfomatics initiatives in oncology include ASCO’s CancerLinQ, Syapse, and Flatiron.
“I think the main difference is that it’s an academically-driven organization that’s committed to setting a standard for data sharing in which public release is the goal,” Sawyers said to The Cancer Letter. “They’re similar in that they’re building registries of patients who are being sequenced in clinical oncology practice and trying to gather relevant clinical outcome data. But to my knowledge, most of those have a for-profit component and have a business model that doesn’t lead to open public release because their clients are paying for access to the data.”
A conversation with Sawyers appears here.
The registry aggregates and links clinical cancer genomic data with clinical outcomes from patients treated at eight institutions:
Dana-Farber Cancer Institute
Gustave Roussy Cancer Campus, Paris-Villejuif, France
The Netherlands Cancer Institute, Amsterdam, on behalf of the Center for Personalized Cancer Treatment, Utrecht, The Netherlands
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Memorial Sloan Kettering Cancer Center
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