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Geneial Proposes Marketplace Approach to Rare Disease Data Sharing


NEW YORK – Health technology startup Geneial wants to serve as a matchmaker for rare genetic disease research, linking and facilitating data exchanges between scientists studying such diseases and organizations that hold needed patient data.

The Houston-based startup, founded by brothers Adam and Chris Hansen in 2020, seeks to build a marketplace of genomic data on rare diseases. The company recently was awarded a $2.3 million grant from the National Institutes of Health's National Human Genome Research Institute to do just that.

Geneial's vision is to provide the data foundation for scientists developing and testing targeted diagnostics and therapeutics.

"Our long-term vision is to accelerate the adoption of precision medicine through private data exchange," said CEO Adam Hansen, who has a Ph.D. in genetics and genomics from Baylor College of Medicine in Houston.

There are an estimated 7,000 rare diseases — many of them genetic — that affect roughly 30 million people in the US. By definition, any given rare disease only affects a small segment of the population. It can be challenging for researchers to get enough data to study a rare condition, let alone develop treatments.

Geneial plans to take a two-pronged approach to try to alleviate that burden: create software to help organizations manage data internally, as well as help them monetize it.

Geneial has built a software platform, Bridge, which hospitals, rare disease advocacy groups, and other organizations can use to manage biomedical data on rare diseases and map such data to standards. Organizations will also be able to manage interactions with patients participating in research through Bridge and a companion patient-facing app, Advocate, that Geneial is in the midst of developing.

The next phase of Geneial's vision will involve launching a marketplace where customers of the Bridge platform can list their data.

Drug developers, contract research organizations, and others studying rare diseases will be able to search for patients who have certain phenotypes or genetic markers, among other criteria, and the platform will connect them with organizations that have such data. From there, they'll be able to establish a data-sharing agreement, including payment terms.

Geneial is taking a decentralized approach to data exchange, said Chris Hansen, Geneial's chief operating officer. Rather than corralling organizations' data into one dataset that the company manages on its own, it's giving organizations tools to manage their data and providing the software to broker transactions.

"We don't want to be a data owner," he said. "We want to be a trusted, neutral third party that can facilitate improving quality of data and … access to data."

Organizations might exchange anonymized datasets or individual-level patient data, such as for clinical trial recruitment, depending on the terms of the agreement. A patient would need to sign off and consent before their information is shared at an individual level.

"A major part of the motivation for founding Geneial was seeing that patients were cut out of the loop of the research process," Adam Hansen said. "We see a lot of opportunities to ensure that research has direct benefit for participants."

Geneial, which is currently raising a seed funding round, has already launched the Bridge platform at Baylor College of Medicine's Human Genome Sequencing Center (HGSC). Geneial and HGSC have worked together on a proof of concept for searching registries with encryption technology, so that users can query data while protecting patient privacy, according to the company.

Geneial has a waitlist of organizations in the US and abroad that have expressed interest in Bridge, according to the Hansens. They declined to share how many organizations.

Adam Hansen said that Geneial is part of Web3, a movement that envisions a decentralized internet in which individuals maintain control of their own data with the help of technologies like blockchain. That contrasts with today's online ecosystem, in which people's data is held by major tech giants and social networks.

While Geneial doesn't use blockchain, it's using encryption and other tech to make the company's network searchable without centralizing the data in one place, he said.

It's critical for organizations to share rare disease data with one another, said Alexander Shlyankevich, a senior healthcare analyst at market research firm Forrester. For some diseases, there might only be a few hundred patients with the condition across the globe.

"Data sharing is the only way to find a cure for those diseases, because of the scarcity of the data," he said.

Startups developing a business model around that need must articulate the value they offer compared to other data resources, such as those maintained by academic and research institutions, Shlyankevich said. One component of that is supporting organizations and individuals as they monetize data; another component could be offering data-analysis tools.

While not specifically focused on rare diseases, the NIH’s All of Us Research Program represents another option researchers have when seeking out biomedical data. All of Us is collecting medical histories and genetic data to create a resource for researchers, with a goal of accumulating information from 1 million people. In the UK, 500,000 patients have shared biomedical data with the UK Biobank, another research resource.

"There are a lot of different models for how we achieve this goal of being able to have adequate numbers of patients with rare diseases consented and sharing genetic and phenotypic data," said Ken Mandl, director of the computational health informatics program at Boston Children's Hospital. He also leads the Genomic Information Commons, a research network of eight children's hospitals that takes a federated approach to data sharing.

In addition to initiatives run by governments and academic institutions, there are newer efforts to facilitate patient-led data sharing, Mandl added.

It will be interesting to see which approaches drive the market, Mandl said. One consideration will be whether organizations share detailed phenotypic data along with genomic data, which can be important for research.

Software companies in recent years have also launched a spate of data-sharing ventures for research. Epic Systems, Cerner, and Allscripts, three leading providers of electronic health records software, have all released tools to share anonymized patient records for research and recruit patients for clinical trials.

And last year, more than a dozen health systems joined forces to found Truveta, a for-profit data company that corrals aggregated and de-identified data from its health system members.

Geneial doesn't see itself as competing with established companies that offer access to data or manage clinical trials, according to Chris Hansen. He said he sees Geneial as complementary, since many of those companies, such as contract research organizations, could be potential customers that exchange data through Geneial's platform.

"We're supplementing options that are out there, rather than … replacing options," he said.