A genetics testing company wants to change the way patients contribute to research
A genetics testing company is launching a new database where patients can contribute information that could be used to research certain diseases.
Invitae, the company behind the Patient Insights Network, hopes that by having patients input their own information, it could create a better starting point for researchers looking for potential treatments to diseases.
"What we're trying to do is generate high-quality data that's available to advocacy groups," Invitae CEO Sean George told Business Insider.
As part of the genome network, patients can enter in genetic data they might already have (not necessarily collected from an Invitae test), answer questions about their medical history, and the database will link up with information from the patients' electronic health records.
The PIN is a little different from other approaches that tend to capture specific data for one project and often don't directly involve patients.
"It's really never been done before," Bonnie Addario, founder of the Bonnie J. Addario Lung Cancer Foundation (or ALCF) told Business Insider. The ALCF is setting up its own database with the help of Invitae and hopes to pull in data from its existing patient network as well as other lung cancer organizations. Addario said she plans to keep her database as an open-source platform. "It puts patients in the driver's seat," she said.
For now, the PIN will be open to people who have a family or personal history of cancer. Later this year, Invitae hopes to add other conditions.