“If you think about the scientific revolutions that have occurred in history, they’ve been driven by one thing—the availability of data. From Copernicus to quantum mechanics, it’s data that drives innovation.” So says cancer computational biologist John Quackenbush in an interview in the May edition of Fast Company. And despite all the talk about massive amounts of genomic data being churned out by next-generation sequencing instruments, much of it is not actually available, at least not in the way Quackenbush and a lot of cancer patients want it to be.

GenoSpace CEO John Quackenbush
GenoSpace CEO John Quackenbush

For several reasons, including competition and patient privacy, genomic data is held closely by the companies and institutions that generate it. But pooling it to enable more massive comparisons among disease types and treatment outcomes would lead to faster cures, many argue.
So, Quackenbush, director of the Center for Cancer Computational Biology at the Dana-Farber Cancer Institute and CEO of the two-year-old bioinformatics company GenoSpace, has teamed up with cancer survivor and Multiple Myeloma Research Foundation founder Kathy Giusti, a former big pharma executive, to tackle the enormous problem.
CoMMpass (an acronym for Relating Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profiles Study) is an ambitious undertaking to collect and analyze tissue samples and genetic information from some 1,000 multiple myeloma patients over the next 5 years. The Multiple Myeloma Research Foundation recruited the participants, and Quackenbush’s company developed the technology that will enable researchers, clinicians, and patients to use the public repository. GenoSpace has called it “the largest, consolidated patient information ecosystem accessible to all researchers.”
Ideally, according to MMRF, the outcomes will include “a guide to which treatments work best for specific patients, allowing doctors to select the most effective treatment for each patient” as well as “data and insights that will help [researchers] design the next generation of multiple myeloma treatments targeted towards patients with specific genetic markers.” GenoSpace says the system will also offer “tools that empower patients with multiple myeloma to more directly and fully participate in the scientific discovery and clinical research processes.”
And multiple myeloma is just the start. Quackenbush and Giusti tell Fast Company, “two or three years down the road, tens of thousands of patients across the country could become part of this large data resource, and help drive innovation. What we’re doing is putting in place the incentives for other diseases to join.”