NEW YORK – Health technology firm Geneial on Thursday said it has received a $2.3 million grant from the National Institutes of Health's National Human Genome Research Institute that it will put toward building a genomic data marketplace for researchers studying rare diseases.
The Houston-based startup, founded in 2020, will use the grant specifically to develop a software platform for researchers to access biomedical data on rare genetic diseases.
"Over 400 million individuals worldwide suffer from a rare disease, yet only 5 percent of these have an available treatment," Geneial CEO Adam Hansen said in a statement. "This is largely because data is highly fragmented across silos, which impedes the progress of research and therapeutic development."
Lack of interoperability, or the ability for software systems to exchange information with one another, is a challenge facing the entire healthcare system. It's a particular hurdle for studying rare diseases, since individual hospitals, universities, and research organizations may not have enough data on patients with a rare disease to pursue research on their own.
Geneial's goal is to encourage organizations with such data to share it. Biobanks and other organizations that hold genomic data from patients with rare diseases will be able to monetize this information by connecting it to Geneial's platform, essentially allowing them to "rent" the data to other researchers without losing ownership, according to Geneial's website.
Scientists, in turn, will be able to query the marketplace to find relevant datasets for their precision medicine research. The data is decentralized and only shared with scientists who purchase it, according to Geneial. Third-party companies, including Geneial, won't have access to the data.
Earlier this year Geneial and the Baylor College of Medicine's Human Genome Sequencing Center (HGSC) in Houston announced they had developed a proof of concept for searching registries that was privacy-preserving and Health Insurance Portability and Accountability Act-compliant. The project used a simulated dataset from the HGSC's registry for Xia-Gibbs syndrome, a rare neurological disorder. For the proof of concept, Geneial used encryption technology that allowed users to query the dataset while protecting the privacy of patients' data.
"We are eager to continue our partnership through the course of this grant and beyond as their offerings expand," Richard Gibbs, HSGC's founder and director, said in a statement.
The NHGRI awarded Geneial the grant through its Small Business Transition Grant for Early Career Scientists program, through which the agency provides funding to early-career academic scientists looking to move into entrepreneurship. Fewer than 10 companies have received funding through the program to date, according to Geneial.