Rare Daily Staff

Sano Genetics, which is developing a research platform that allows patients to control access to their genetic and health data, said it raised more than $655,000 (£500,000) in seed funding.

Built as a project by three doctoral students at the University of Cambridge as a way to advance the use of genetic and health data to drive personalized medicine, they say it addresses uncertainty around privacy policies and data ownership from big, direct-to-consumer sequencing companies.

Sano said its platform will enable large-scale genetic and medical research without sacrificing data privacy by allowing patients to control who has access to their data and how it is used.

The company is accumulating patient data to fuel drug development in both rare diseases and more common diseases. It said it is seeking to enroll more than 10,000 people and support half a dozen new research projects by the end of this year.

“We want to build the platform that will make personalized medicine a reality,” said Patrick Short, CEO of Sano Genetics.

The seed funding included participation from Seedcamp, Cambridge Enterprise, and several individuals along with grant funding from the University of Cambridge, the Wellcome Genome Campus BioData Innovation Centre, and the Y Combinator Startup School.

Sano is free to register — people are asked to provide basic information about their medical history to help match them to relevant research studies. If they already have genetic data — from an ancestry test, for example — they can add it to their profile and, with their consent, this can also be used in research. The company also works to match people with a research project that can fund the cost of DNA sequencing. Participants are given access to free personalized reports written by research scientists, based on their genetic data.

“Our drug discovery and cell therapy research is often limited by outdated consent models and limited options for keeping in touch with patients to request participation in new studies,” said research scientist Mark Kotter, CEO of Elpis Biomed.  Sano’s work to match interested patients and patient groups with research projects has the potential to transform drug discovery and personalized medicine.”

A selling point to patients is that Sano provides data and results to them. Andy Kulina was one of the first users of the Sano platform. His daughter has the rare genetic disorder Phelan-McDermid syndrome, which affects cognitive development, communication and mobility. He said he rarely see any data from studies in which his daughter participates. “Even when results are returned, they are often full of medical jargon,” he said. “I really appreciate the way Sano is working to support great research while giving participants full access to data and results.”

Photo: Patrick Short, CEO of Sano Genetics