The National Cancer Institute hopes a new data-sharing agreement with Foundation Medicine is the first of many.
by Mike Orcutt
If Vice President Joe Biden’s Cancer Moonshot is really going to double the pace of progress in preventing, diagnosing, and treating cancer, it’s going need a lot more data. That means it’s probably going to need more data-sharing arrangements like one announced at today’s Cancer Moonshot Summit in Washington, D.C., between the National Cancer Institute and Foundation Medicine, a biotech firm selling tests that sequence tumor genomes.
To speed up advances, Biden has called for more data sharing and collaboration between cancer researchers in academia, industry, and the government. Foundation, which will give the NCI genomic “profiles” of tumors from 18,000 adults, is the first company to contribute to the NCI’s new “Genomic Data Commons,” a public database and analysis platform for cancer genomics. The new data doubles the size of the database, which is crucial to Biden’s project and to President Obama’s Precision Medicine Initiative. It will help researchers study genetic abnormalities seen in many cancers, and it could also help lead to new opportunities for treatment.
Vice President Joe Biden is leading an effort to accelerate cancer research.
Before today, NCI’s database held sequencing information from the tumors of some 14,500 patients with cancer, including clinical data about how they responded to drugs. Large databases like this could help researchers better understand the nature of cancers and locate clues as to why some tumors respond to drugs and others don’t, and why some respond and then relapse.
The information from Foundation isn’t so comprehensive; it will not include information about how patients responded to drugs. Nonetheless, it is a “dramatic” addition to the NCI’s existing data resources, says Louis Staudt, director of the NCI’s Center for Cancer Genomics. The larger the data set, the greater the chance new things will be discovered. “By more than doubling the number of patients, we will vastly increase the explanatory power of the database for understanding cancer,” says Staudt.
The idea of precision medicine is to use as much biological information as possible to make sure that treatments are more precisely tailored to individuals and their diseases. The challenge of doing this for cancer is that it is far from a single disease—there are at least 200 forms and many more subtypes, defined by specific abnormalities in tumor genomes.
Some patients have tumors with abnormalities seen only in an extremely small fraction of people with that kind of cancer, says Staudt, and in some cases there are drugs that work against those rare cancers. There could be similarly uncommon alterations that haven’t yet been found and might represent new targets for drugs. Adding more patients to the NCI’s database increases its power to help discover them.
Staudt hopes the donation by Foundation Medicine will inspire similar moves by other groups with data sets that would be valuable for cancer genomics. The NCI will also be generating its own new data through innovative clinical trials like NCI-MATCH, which is focused on testing targeted therapies on large numbers of patients whose tumors contain specific abnormalities.
Ideally what’s needed is a collection that includes both large amounts of patient sequencing information and detailed clinical information, especially about therapy outcomes, says Clifford Hudis, CEO of the American Society of Clinical Oncology. That means doctors will have to improve their data entry in medical records and the data will have to be readable by computers, he says.
But bringing this type of information together will also be complicated by concerns about patient privacy and laws governing the sharing of such data. And commercial entities aren’t always going to be willing to part with their data. Foundation says it has done so in this case in order to “accelerate” precision medicine. “Maybe this gives us a jump start,” says Hudis.