Hi everyone – I wanted to check in about your involvement or experience with clinical trials. I have had T1D for almost 19 years (was diagnosed at age 10), have been on a pump for 18, and just got on a CGM in June! Despite how long I’ve lived with T1D, I’ve never actually been involved with a formal clinical trial.
When I was younger, I remember my care team at Seattle Children’s Hospital allowing me to try out some new technology – the original CGMs and such. In college, my care team at the Diabetes Research Institute in Miami recommended some type 2 drugs – not widely used in people with T1D – in an attempt to bring my A1c down. But none of these experiences were actual trials – they were just new methods my doctors had access to.
Despite now working for JDRF HQ since March, which is a huge resource to be so close to the action, I still get a bit apprehensive about getting involved in trials, honestly. I don’t have any complications, but I do feel like I’ve gotten more sensitive to changes in how I take care of my T1D. I’ve really loved poking around JDRF’s new clinical trials tool (Find a JDRF Clinical Trial - Research for T1D Cure & Treatment if you haven’t found it yet), but I am always curious about how it would go if I actually got involved in a formal trial.
For anyone who has been involved in trials, what’s your experience been like? Did you find it disruptive to your routine, or helpful? How often did you have to go to appointments or report back on your blood sugar levels, etc.? What kinds of trials have you been involved with? Were they helpful in your treatment?
Like you, I’ve been working with diabetes and have been involved in diabetes experiments for many years and I’ve had some really rewarding experiences in trials. I would very willingly participate in additional trials when and if any are conducted in my area. One of the studies / trials was the precursor tester for the DCCT study - yeah, way back when preferred T1 treatment was one or two shots of long-acting insulin a day I was, under doctors observation stepping into MDI; this also involved testing pens for various manufacturers.
Everything else aside, the most fulfilling trial in which I was involved, also the most scary, was my very first. In 1966 on my first visit with the medical director at Joslin Clinic, I was told that I apparently had “diabetic retinopathy” for which there wasn’t any cure and most likely within two years I’d be effectively blind. Great news for a guy who had been married for less than a month. Cut a long story short, I was referred to an ophthalmologist in Boston, Lloyd M. Aiello, who had a theory for a treatment using a laser beam. He was looking for volunteers, so after speaking with a couple of folks I agreed to be a patient. I had to wait about a year until a weapons grade ruby laser was modified for medical use.
For my first session with the laser, I had to be an inpatient and the procedure was done with me on an operating table; immediately after the 284 burns on my left retina I was moved to a rom and heavily sedated until the following day when I could get up and walk about. Upon discharge my instructions were to "do nothing strenuous for six months and don’t try to lift more than five pounds; we had a new baby then and if I wanted to hold her I had to sit and she would be placed in my lap. I returned to Joslin about every other month for five years to have more burns - yes, 49 years later I still see fairly well.