Later this year, the Multiple Myeloma Research Foundation and genomic software startup GenoSpace plan to launch a massive data project that could have a big impact on the way medical data is shared. Called the CoMMpass study, it will follow 1,000 multiple myeloma patients over a 5-year period to help scientists understand the molecular changes underpinning the progression of the disease in an effort to find more effective treatments for patients.
CoMMpass--which stands for Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profile--opened enrollment in July 2011 and has 50 active sites that have screened more than 200 patients to date.
In an interview with Fast Company, John Quackenbush, CEO of GenoSpace and director of the Center for Cancer Computational Biology at the Dana-Farber Cancer Institute, and Kathy Giusti, founder of MMRF, talked about the importance of data in treating the deadly orphan cancer and the potential it has to drive innovation. They said one of the biggest barriers to better treatments and innovation is the lack of publicly available data for medical studies and clinical trials.
"We've created a culture in research where we don't want to share data, where the incentive is not to make it available to anybody who could use it effectively. It's not a community striving toward a solution," Quackenbush told the magazine.
So, the MMRF and GenoSpace are trying to change that. Over 15 years, the foundation has raised $225 million, sequenced the myeloma genome, and opened 45 trials of 23 drugs--6 of which have approved by the FDA--and by doing so, drastically extended lifespans for patients.
The project could not only help tailor individualized treatments for multiple myeloma patients, but it could also identify drugs that work in colon cancer or breast cancer, depending on a person's genes.
Quackenbush told that magazine that in two or three years, potentially tens of thousands of patients in the U.S. could become part of this huge database, laying the groundwork for other diseases to join in to help drive innovation.
GenoSpace and MMRF are currently beta testing the project.
- read the Fast Company interview