To truly understand someone’s experience, put yourself in their shoes. No doubt, you have heard this adage and it is certainly the case for the many people who participate in clinical research. Many of us who work at NIH regularly say how invaluable clinical study participants are to improving public health, but have you tried on their shoes yet?
I was first exposed to clinical research as a graduate student. Although financial compensation did provide some motivation (I was a poorly paid grad student after all), the promise of turning clinical research discoveries into public health benefit was the principal driver for my continued participation. As interesting and educational as these opportunities were, they did not study genetic retinal diseases that cause progressive vision loss—something close to home for me.
So, I searched “retinitis pigmentosa” in ClinicalTrials.gov, and inquired about a study. I soon received a response, which to my shock actually came from the then-director of the National Eye Institute.