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Published On Sep 12, 2016

Clinical Research

And Free the Medical Records

Data from patients’ everyday medical records can also be mined—anonymously—to offer new insights on how diseases work.

Clinical trials and laboratory experiments aren’t the only sources of valuable data. With a large enough store of patient medical records, a researcher could compare the ways different treatments work and perhaps gain insight about how diseases progress.

To make that easier, the American Society of Clinical Oncology has launched CancerLinQ, a warehouse of detailed patient data exported from the electronic medical records of participating oncology practices. Richard L. Schilsky, chief medical officer of the society and former director of the University of Chicago Medicine Comprehensive Cancer Center, says there are now more than one million clinical records in CancerLinQ. “Our plan is to continue adding cancer practices throughout the country and around the world,” Schilsky says.

Physicians and researchers can use this data to answer questions that are beyond the scope of data from clinical trials, which involve only 3% of patients with cancer. “Only 10% of patients in clinical trials for cancer are 65 or older, while 60% of all cancer patients are in that age group,” says Schilsky. Tapping CancerLinQ’s broader cache of information, an oncologist might query the database about the effectiveness or toxicity of cancer drugs used off label (to treat conditions for which they haven’t been approved by the Food and Drug Administration), or to see how specific groups of patients fared during treatment.

Researchers and clinicians will also be able to compare the effectiveness of therapies for various types of cancer. “If a kidney cancer patient wants to know which of the seven approved therapies will work best for him, CancerLinQ can help his physician provide that information,” says Schilsky.

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