Transforming Health Through Clinical Trials: My Journey from Diabetes Patient to Researcher

When a researcher develops something new, with the hopes of using it to improve people’s health, they must allow that new thing to undergo clinical trials before making it available to the general public.

What types of things do clinical trials test?
The two main categories of interventions tested in clinical trials are drugs and medical technology. Today, I will share my experience with clinical research, as both a trial participant and a technician at a research center.

My Clinical Trial Origin Story
I first learned about clinical trials from my endocrinologist when I was in middle school. At that point, he had been treating my type 1 diabetes for almost 10 years. He told me that researchers at the University of Virginia Center for Diabetes Technology (UVA CDT) were testing something called an artificial pancreas for use in children, and they were doing so at a summer camp.

“Wait, research at a summer camp?” I asked.

My doctor explained to me that, in order for the makers of the new technology to ensure that it was safe and effective, even when kids are outside expending lots of energy, they needed to test it in a controlled environment. For me, this was an opportunity to go to summer camp (big win) with other diabetics (even bigger win), and be a part of making available a new technology that would improve the quality of care that insulin-dependent diabetics receive. To me, this was the biggest win of the whole deal. My parents agreed, and after a screening visit to make sure that I was a good fit for the trial, I was set to begin.

During the trial itself, I had the opportunity to meet lots of new people. We talked about the highs and lows (primarily emotional, but sometimes literal blood sugar talks) of living with type 1 diabetes. It was nice to relate to my peers in that way. I also enjoyed hearing from other people in diabetes research, since their perspective on this thing that had such a big role in my life was different from mine, and I could learn from them. Everyone involved was excited to play a role in developing a new technology. And I didn’t know it at the time, but the algorithm CDT was testing would later be brought to the public in Tandem’s Control-IQ hybrid closed-loop system, a system worn by hundreds of thousands of diabetics, myself included.

I went on to complete multiple clinical trials with CDT. Not all of them were as glamorous as summer camp (though there was one study I participated in as a snowboarder). Sometimes, I had to stick to a regimented diet and ride a stationary bike to see how the artificial pancreas system handled low blood glucose. At all times, though, my pros outweighed my cons. I was able to try out an exclusive technology that did some of the work for me, and it was possible that the technology they were testing could be made available to the public, thanks to my participation. Also, some clinical trials come with monetary compensation, which helps to cover expenses such as travel and lodging.

On the cons side, I had to disrupt my schedule and temporarily hand over part of the control that I had fought for and acquired over years. That’s scary! It eased my mind to know, though, that I was being monitored around the clock, and there was always a physician on standby to intervene if necessary. It was also my right (as is the right of every clinical trial participant) to stop taking part in the study at any point, without fear of repercussions.

Working in Clinical Trials
I later attended UVA for my undergraduate education, and when I saw a job posting for a data and lab technician with CDT, I knew I had to apply. In that role, I performed tasks such as monitoring blood glucose data during clinical trials, troubleshooting disconnections during in-person and at-home studies, and preparing medical equipment to be provided to participants. I had the opportunity to listen to researchers describe their motivations and passions for improving the health of diabetics like myself. I also got to hear from study participants what they liked and what they didn’t about the trials. I saw all of that feedback get documented and implemented as much as possible in the designs of later studies.

All told, clinical research has shaped many aspects of my life. It helped me realize just how large the diabetes community is. Managing the health of yourself and your loved ones can be tiring and isolating, but clinical trials showed me just how many people are rooting for us. It gave me hope that the struggles I’ve faced in taking care of myself may be lessened or eliminated in the future. For me, hope has been an incredible benefit to participating in clinical trials, and I couldn’t recommend it enough.

If you’d like to learn more about clinical trials, check out ClinicalTrials.gov or Breakthrough T1D’s site which includes information about trials and a trial locator. You could also talk to your health care provider or another trusted member of your health care team.

Thank you to Vertex for sponsoring this article!