The development of new drugs and medical devices often progresses through a well-established research trajectory, beginning with studies on simple organisms like fruit flies and zebrafish. This research then advances to more complex mammals, including mice, rats, and primates, before reaching the final stages of clinical trials in humans. What is notably absent throughout this progression, however, are the voices of patients who suffer from the disease or condition being studied, as well as those of their families and caregivers. In most cases, researchers have not spoken directly with a patient experiencing the very disease that is the focus of their work.

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