Former Newsday and Baltimore Sun journalist Alex O'Meara wrote a very useful book entitled "Chasing Medical Miracles: Promise and Perils of Clinical Trials" which would-be trial participants owe to themselves to read.  Mr. O'Meara himself is an islet transplant recipient that did reverse his autoimmune mediated type 1 diabetes mellitus, but he cautions (see http://goo.gl/33VSz) that clinical trials are not medical treatment. Although you might benefit from a trial, that is NOT the reason the trial is being conducted. The trial is being conducted to gather data – period, end of story.

Prior to enrolling, be aware with whom you are speaking. Ask the person you are meeting with to describe to you their role in the trial.  For your first visit (and for visits afterward) you should also take someone with you. This is helpful because you are going to be receiving a LOT of info and it's difficult to process it all on your own without having someone to review it with you.   Also, during the Clinical Trial, at ANY point during the trial, you have a guaranteed federal and international right to drop out. 

Be sincere about your involvement. Keep a diary if it's required. Go to all appointments you agreed to go to. Take all the tests you agreed to take. Adhere to the guidelines you agreed to when you signed up.  Also, continue to ask questions. You should ask and expect answers to questions about the clinical trial overall, about your test results, about results thus far from the trial, and side effects, about what to expect in the next step or steps in the trial, and about anything else that you are not clear about or that you are merely curious about as you proceed through the trial.

You should also ask the research team to copy your primary care physician on all your test results. Let your primary care physician know you are asking this and to expect these test results.

David Mendosa, Health Guide

7/12/11 6:41pm

Dear Scott,

 

Thank you so much for your excellent advice!

 

David