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CancerLinQ Partners with National Cancer Institute on Data Sharing Collaboration

June 2, 2017
by Heather Landi
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CancerLinQ LLC and the National Cancer Institute (NCI) announced a partnership to facilitate the exchange of information between CancerLinQ participating oncology practices and NCI’s Surveillance, Epidemiology, and End Results (SEER) program, one of the primary sources of data on cancer incidence and survival in the United States.

The partnership aims to put valuable population-level cancer data at oncologists’ fingertips, while also strengthening the nation’s cancer surveillance efforts through a national data sharing collaboration.

CancerLinQ is the American Society of Clinical Oncology’s big data initiative to rapidly improve the quality of cancer patient care.

Also this week, CancerLinQ announced a partnership with the U.S. Food and Drug Administration (FDA) to use real-world data from CancerLinQ to help answer questions about the best use of emerging cancer treatments and inform future regulatory decision-making. The long-term partnership with the FDA will harness cancer patient information and big data analytics to examine the real-world use of emerging and newly approved cancer therapies. FDA and CancerLinQ researchers will use CancerLinQ Discovery, a research and analytics platform that allows users to analyze real-world, aggregated, de-identified patient care data from oncology practices that participate in the CancerLinQ data-sharing program.

“CancerLinQ is becoming a community that learns together to improve patient care,” Clifford A. Hudis, M.D., CEO of ASCO and chairman of the CancerLinQ Board of Governors, said in a statement. “It already includes oncologists, nurses, pharmacists, physician assistants, patient advocates, IT specialists and researchers across the country. In partnering with the National Cancer Institute, we’re closer than ever to creating a comprehensive ecosystem that will enable a virtuous cycle of learning across the cancer care continuum.” 

“When the cancer community combines its resources, we can greatly increase our chances of improving cancer care,” Lynne Penberthy, M.D., associate director for the Surveillance Research Program within the NCI, said, regarding the partnership between CancerLinQ and the NCI. “This collaboration will provide cancer data that are difficult to capture from traditional surveillance methods. These additional sources will enhance our ability to understand patient care and outcomes.”

The new partnership includes two major phases. Initially, NCI and CancerLinQ will incorporate national SEER data on patients diagnosed with cancer into CancerLinQ’s core quality improvement and data-sharing platform, which is now in use at nearly 90 academic institutions and community oncology practices nationwide. 

SEER is composed of 18 central cancer registries currently covering approximately 30 percent of the U.S. population, and includes de-identified population-level data on patient demographics, cancer diagnosis, including tumor morphology and stage at diagnosis, first course of treatment, laboratory data, and follow-up for vital status. With integrated access to SEER data in an easy-to-visualize format, CancerLinQ participants will be able to view and draw comparisons between regional- and national-level SEER data and their own practice data, enhancing the ability to inform clinical care and decision making for their patients. 

In a second phase, NCI and CancerLinQ will pilot a system in selected geographic regions for care providers to quickly and seamlessly upload and transmit their own practice data to the SEER program directly through the CancerLinQ portal. This NCI and CancerLinQ data sharing effort holds the promise to make legally-mandated cancer surveillance reporting activities more timely, efficient and complete, and will enhance the richness of SEER databases for population-level research with longitudinal, real-world data and insights from CancerLinQ.



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