The Clinical Trials Guru

Below is a letter I received from a study participant who reached out to me through Twitter and the blog. I have removed any identifying info. Also included are our video responses on our thoughts re this issue.

Hey Dan,

Wow, you’re amazing to make that vid from the little info I gave you. LOL Such is the nature of professional record collectors? Anyway, I found it very interesting. I want to touch on a few points just for your info since this topic is so important to you.
I’m not just doing the study for my own relief or money. I do quite like the idea that I may benefit other people who are suffering with the information from this study if they do find that XXX is beneficial for treating XXX.
While the staff are friendly, you do totally feel like a lab rat. I have extreme low blood sugar. They told me not to eat the day of the 1st evaluation. So, I went til about 5PM in the evening having not eaten since the night before–kind of intense for someone with hypoglycemia. During the whole study, I haven’t been asked ONCE about the side effects I’m experiencing except for “Are you depressed or suicidal” questionnaires every visit. I asked them what would happen if my mental state did change and the PA said ‘you wouldn’t be able to do the study anymore’. I’m supposed to journal my every movement in regard to the sleep data they’re collecting, but they don’t question me on the physical toll of taking the meds or side effects. I can’t drink coffee or take tylenol if I get a headache. It’s a bit like signing your body over to someone else for $35. Since XXX isn’t approved by the FDA for XXX, I can’t ever use it after the study anyway. So, aside from the communal possibility of helping a stranger in the future, I’m spending a huge amount of my time for very little return. If you added up all the time I’ve put into the study and the financial return (which is all I apparently am getting out of it at this point), I wonder if I’m even making minimum wage. LOL
Anyway, your work is very interesting and I like your style. I would totally do a study with your group if I was in Cali. I’ll keep in touch and let you know how things progress. I’m not planning on bowing out yet. I know the body always acts weird at first upon introduction of a new chemical. Hope all’s well with you. Thanks for immortalizing me with that video, even if anonymous! LOL

Here are our video responses to that letter…