FL Cancer Center Joins Global Genomic Data Sharing Registry

Sylvester Comprehensive Cancer Center, part of University of Miami Health System (UHealth), has been selected for membership in a global genomic data consortium supporting the American Association for Cancer Research’s (AACR) Project Genomics Evidence Neoplasia Information Exchange (GENIE), according to a press release emailed to HealthITAnalytics. 

Project GENIE is a publicly available registry containing real-world cancer genomic sequencing and clinical outcomes data gathered during routine medical care from cancer patients treated at the registry’s member cancer centers, which include Johns Hopkins, Children’s Hospital of Philadelphia, Stanford University, Dana-Farber Cancer Institute, University of California, University of Cambridge, and Netherlands Cancer Institute, among others, the press release indicates. 

The project has collected data from over 160,000 genomic samples taken from 150,000 patients, representing 111 major cancers and 775 cancer subtypes since 2015. 

The consortium aims to advance precision medicine in cancer by addressing the fact that no single institution can sequence enough genomic data or treat enough patients to collect the data needed to provide generalizable evidence and care guidance that can be applied to certain types of cancer. 

Alongside Sylvester Comprehensive Cancer Center, three other institutions have also joined the consortium: Children’s Hospital Los Angeles, Korea University Anam Hospital, Louisiana State University Health Sciences Center New Orleans. 

These organizations were selected as part of Project GENIE’s efforts to support diversity, equity, and inclusion, according to a news release published by AACR. 

“We are thrilled to join the AACR Project GENIE and hope to enhance patient diversity in the GENIE program. We are excited to advance clinical and translational research efforts by providing greater understanding of cancer in different patients,” said Pearl Seo, MD, assistant director of clinical research informatics, and assistant director of the precision medicine program at Sylvester, in the emailed press release. 

By joining the consortium, Sylvester Comprehensive Cancer Center hopes to help develop predictive models while contributing clinic-genomic data, which will “enable impactful discoveries transcending race, ethnicity, and geography,” according to Vasileios Stathias, PhD, assistant director of data science at Sylvester. 

Data registries for precision medicine are becoming increasingly valuable for healthcare researchers, and institutions across the US are working to contribute to these efforts. 

Earlier this month, the National Institutes of Health's (NIH) All of Us Research Program shared that 250,000 whole genome sequences had become available to US researchers for use in precision medicine studies. 

All of Us, which began national enrollment in 2018, is a large-scale program that aims to advance population health and precision medicine by collecting and studying 1 million Americans’ health data within a decade. 

The program’s dataset thus far is made up of various patient-related health information, including clinical, genomic, social determinants of health, and COVID-19 data. 

With this newest addition of whole genome sequences, the dataset now contains information for more than 413,450 participants.