Vanderbilt-Ingram Cancer Center (VICC) has joined an international consortium of leading cancer centers to share genomic data from patients in an effort to accelerate the pace of cancer research and improve precision medicine.
That consortium has now released 19,000 de-identified genomic and partial clinical records collected from patients who were treated at eight international institutions including VICC, making it among the largest fully public cancer genomic data sets released to date.
The American Association for Cancer Research (AACR) launched the AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE) to facilitate data sharing among major cancer centers and researchers. The data set of 19,000 genomic records includes data for 59 major cancer types, including data on nearly 3,000 patients with lung cancer, more than 2,000 patients with breast cancer and more than 2,000 patients with colorectal cancer.
VICC’s participation in AACR Project GENIE has been spearheaded by Mia Levy, M.D., Ph.D., Ingram Assistant Professor of Cancer Research and director of Cancer Health Informatics and Strategy.
“As physicians we are all generating massive amounts of data about patients and the genetic mutations in their tumors, along with patient response to medications and other treatments. But much of that data is kept in silos and has not been shared. AACR Project GENIE is one of the first efforts to make some of this data available for cancer researchers so that we can accelerate the pace of discovery,” Levy said.
Enhanced data sharing is also one of the goals of the White House Cancer Moonshot initiative. Levy served on the Blue Ribbon Panel Enhanced Data Sharing Working Group for the Cancer Moonshot.
“Other industries are well ahead of health care when it comes to managing and sharing data, and the health care industry is just at the dawning of this new era of data fluency,” Levy said.
The newly released data are fully de-identified in compliance with the Health Insurance Portability and Accountability Act (HIPAA). They are derived from patients whose tumors were genetically sequenced as part of their care at one of the eight institutions that participated in the first phase of AACR Project GENIE. The genomic data are clinical grade, which means they are the highest quality possible.
By releasing the data to the global cancer research community, the consortium aims to spur new clinical research that will accelerate the pace of progress against cancer. There are several ways in which the data can be used to benefit patients in the future, including through the following: the validation of gene signatures of drug response or prognosis; the ability to identify new patient populations for drugs already approved by the U.S. Food and Drug Administration (FDA); the expansion of patient populations that will benefit from existing drugs; and the identification of new drug targets and biomarkers.
The other institutions participating in AACR Project GENIE phase 1 are Dana-Farber Cancer Institute, Boston; 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, Baltimore; Memorial Sloan Kettering Cancer Center, New York; Princess Margaret Cancer Centre, Toronto; and the University of Texas MD Anderson Cancer Center, Houston.
To expand the AACR Project GENIE registry, the consortium is accepting applications for new participating centers, a year sooner than originally anticipated.
Other VICC faculty and staff who have assisted with the effort include Carlos Arteaga, M.D., Thomas Stricker, M.D., Ph.D., Mary Zutter, M.D., Christine Micheel, Ph.D., Michelle LeNoue-Newton, Lucy Wang, Leigh Jones and Ingrid Anderson.
The genomic data and a limited amount of linked clinical data for each patient can be accessed via the AACR website or downloaded directly from Sage Bionetworks.
