Cancer registry joins with big pharma to create clinico-genomic dataset

The American Association for Cancer Research and nine biopharmaceutical companies have teamed to collect and share clinical and genomic data in order to advance precision oncology.


The American Association for Cancer Research and nine biopharmaceutical companies have teamed to collect and share clinical and genomic data in order to advance precision oncology.

The five-year, $36 million research collaboration—part of the existing AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE)—is aimed at linking clinical-grade cancer genomic data with clinical outcomes in a publicly accessible international cancer registry of real-world data.

Currently, AACR Project GENIE’s registry includes clinical-grade cancer genomic sequencing data from almost 71,000 patients. However, the goal of the new five-year collaborative research project is to obtain clinical and genomic data from 50,000 de-identified patients treated at 19 of the world’s leading cancer centers, creating a clinico-genomic dataset.

“In the first two years, the project will add prior cancer treatments, tumor pathology and clinical outcomes to the clinical data already linked with the genomic profiles of nearly 8,000 bladder, breast, colorectal, lung, pancreatic and prostate cancer patients treated at three of the institutions participating in AACR Project GENIE: Dana-Farber Cancer Institute, Memorial Sloan Kettering Cancer Center and Vanderbilt-Ingram Cancer Center,” according to AACR’s announcement.

Data collection in years three through five of the effort will be expanded to as many cancer types as possible from all active participating institutions.

“The initial focus of GENIE was on quantity and not necessarily the full story of what was happening to patients,” says Jeremy Warner, MD, medical director of the Vanderbilt Cancer Registry and associate professor of Medicine and Biomedical Informatics. “That’s what we are going to be adding, the phenotype side of the genotype-phenotype coin.”

“We are hoping to contribute our biomedical informatics expertise at Vanderbilt and seek ways to basically accelerate the process of getting the de-identified information directly out of electronic health records or other sources to basically fill out the story and automate the process as fast as we can,” adds Warner. “It’s the only realistic way to get to 50,000 or 100,000 or more patients with full cancer histories.”

The $36 million project is being funded by nine biopharmaceutical companies—Amgen, AstraZeneca, Bayer HealthCare Pharmaceuticals, Boehringer Ingelheim, Bristol-Myers Squibb, Genentech, Janssen Research & Development, Merck and Novartis.


“We are extremely excited about the opportunity to work collaboratively with our colleagues in the biopharma sector to expand the clinical content of the GENIE registry and bring us closer to fulfilling our goals of improved clinical decision making, and catalyzing clinical and translational research,” says Charles Sawyers, MD, chairperson of the steering committee for AACR Project GENIE and chairperson of the Human Oncology and Pathogenesis Program at Memorial Sloan Kettering Cancer Center.

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