A new FDA tool aims to inform cancer care, but experts say it has a glaring gap

A new Food and Drug Administration platform gives cancer patients and physicians a way to comb through data on the experiences of clinical trial participants — but experts say it’s missing critical details to make that information actually useful to patients.

The website, called Project Patient Voice, is a publicly searchable database of patient-reported outcomes, or information on symptoms and side effects collected by surveying participants during a clinical trial. Those reports often aren’t included in a drug’s labeling once it’s approved, meaning the public almost never sees them. The tool is designed to give patients and their health care providers more information as they navigate cancer treatment decisions, particularly when it comes to weighing the potential long- and short-term side effects of a given therapy.

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