Transforming the Rare Disease Landscape with Data

AllStripes, formerly known as RDMD, recently completed a $50 million venture round, which it will use to launch 100 new rare disease research programs. Global Genes recently interviewed AllStripes Co-founder and CEO Nancy Yu about the growing efforts around patient data collection, where AllStripes fits into this emerging landscape, and how data can transform the outlook for people with rare diseases.

Commenting on the large growth in data collection efforts around rare disease in the past few years, Yu said, “I think the urgency and the demand for all of this information that has been missing for quite a long time is now coming to a head. And that’s really driven by a lot of the science that has come to market. We have these great gene therapies, gene editing technologies, et cetera, that are now facing this need for clinical development. And that’s where we’re getting stuck because we don’t know much about the disease and there’s not much existing data.”

A number of business models around data collection have been developed over the years. AllStripes partners with patient advocacy groups and writes its own content about patient stories to create more awareness about an individual condition. AllStripes also works with researchers—primarily drug development researchers—because its primary mission is to discover new treatments.

“Bridging these two different stakeholders, patients and drug researchers, bringing them to one platform where we don’t have these classic challenges with exclusivity and who gets access to the data—patients own their own data,” Yu said. “They can use the data however they want, and they can have their data be used for multiple different research studies.”

AllStripes does not charge participating patients a fee for retrieving their medical records, and the company even checks around to make sure patients haven’t forgotten other places where they received care. The company makes money by charging life sciences companies, who pay to get access to certain software it provides them.

“What I think people often don’t understand is once you get the medical records, a lot of work still needs to be done to extract out information that’s relevant, it’s data that is messy,” Yu said. “So just having the data and throwing it over the wall is not how the industry works. It requires our research team going into the data, analyzing it, answering the specific questions for life sciences. And for that reason, we charge that platform fee around research, and into actually analyzing the data.”

Read the full interview on Global Genes.