They ranged in age from 15 to 61—four African American women, all with stories to tell about their struggles with sickle cell disease, all with stories about a common experience that helped them through those struggles: participating in clinical trials.
It mattered, said the women, all of whom had joined trials funded by the National Institutes of Health (NIH). Their participation helped them better manage their condition, they said. It allowed promising treatments to be tested, and at least in one case, it led to a virtual cure.
The trial participants spoke to a standing-room-only session at the Annual Sickle Cell Disease Clinical Research Meeting, hosted in August by the National Heart, Lung, Blood Institute (NHLBI), Division of Blood Diseases and Resources (DBDR). The audience included researchers, health professionals, and patients and their families, and most were acutely familiar with the problem of diversity in clinical trials generally, and for sickle cell disease patients, in particular.
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