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In the past, we’ve talked about the impact people with T1D can have by participating in studies. Every scientific breakthrough has made its way into the hands of people after rigorous testing that proves the advancement is safe and effective.
Making a difference for the T1D community is hugely important, but there are a few other key benefits to participating in T1D research! I wanted to share a few of these benefits that I’ve been lucky enough to experience through several different studies over the past 8 years.
Here are three major reasons why I jumped into research studies and never looked back:
Studies require you to be more diligent about T1D care.
When I volunteered for my first clinical trial, I was fresh out of college and had been living with T1D for two years. I hadn’t yet mentally adjusted to living with T1D. I took insulin whenever I happened to remember, re-ordered my prescriptions upon realizing that I was already out of supplies, and I’d never even considered the idea of carrying backup supplies with me away from home.
But getting involved in research was the accountability I needed to build a routine around T1D. The requirements of a research study provided a bit of structure for my still-adjusting brain. The pieces of life with T1D that I had been unintentionally neglecting were suddenly important to me because I didn’t want to mess up the trial or cause any issues for the researchers working so hard to make my life better. People were depending on me! Science was depending on me! In my eyes, the future of people with T1D was in my hands and I had to do my part to make life better for all of us.
The first research study I was in taught me how to be responsible for managing my T1D, but even now there are days when I wish I could just lay in bed for a few more hours rather than getting up to change my pump site. But I know that my clinical trial team needs an accurate portrayal of how my study device is working – without being skewed by my personal choice to stay in bed.
You get free supplies, (and maybe even a little extra cash!)
Clinical trials investigating new T1D therapies or devices give participants the latest and greatest therapies for free. It’s a great opportunity to try something different without having to spend a ton of money on a new medication or device. You may even realize that you want to incorporate something similar into your standard T1D care routine.
Some studies also provide compensation for your time and participation, especially studies that require a substantial amount of effort from the participant. Not only do you get to test out potential therapies that could help people with T1D, but you might also make a little extra cash!
Through participating in device studies, I’ve received free pump and sensor supplies for nearly two years. This was great at first, but it was a real lifesaver when I lost my job during the pandemic. Not only was I able to continue getting supplies with no out-of-pocket costs, but I also had built up a backup supply of device supplies that I could rely on if needed.
You can get T1D care from some of the most brilliant researchers in the diabetes space.
I think one of the biggest benefits of participating in a T1D clinical trial is that you get care from some of the greatest minds in T1D research!
One time I walked into a trial appointment and gasped out loud when I saw a researcher whose name I’ve seen in countless research publications, and about whom I’ve heard so many awesome things. It feels so important to be in a group chat with these incredibly smart people who have dedicated their careers to helping people like me.
Fangirling aside, participating in a clinical trial for a new drug or device can provide care from health care professionals who are diligently monitoring your progress in the study, and thoroughly discussing any issues that arise. Having reliable access to a T1D care team could make a huge difference for people who might not typically have access to dependable care.
So, why doesn’t everyone participate in research studies?
In April 2021, we asked a Question of the Day to understand why people haven’t participated in recent research studies. The top 3 reasons people selected when responding to that question were:
- Living too far from in-person clinical trial sites: 29%
- Lack of awareness about a trial opportunity until after recruitment is over: 22%
- Not knowing where to look for clinical trial information: 17%
The biggest reported reason members of the T1D Exchange Online Community have not participated in recent research studies is that they don’t live near clinical trial sites. The second and third most commonly selected responses highlight the issue of awareness for actively recruiting clinical trials.
The T1D Exchange Registry aims to lessen these three barriers as much as possible by connecting people with research opportunities including online surveys, virtual studies and in-person clinical trials. After joining the Registry, participants get notifications on their T1D Exchange Registry Dashboard about future research opportunities for which they might be a good fit.
We are excited to bring more research opportunities to T1D Exchange Registry participants as we continue to grow and evolve the Registry. Stay up to date on upcoming online and in-person studies for which you might be eligible by joining us!
Join the Registry
In addition to the T1D Exchange Registry, I’ve also used jdrf.org/clinical-trials and clinicaltrials.gov to find clinical trials near me. There are so many opportunities to participate in research, so I like to search these sites every once in a while to see how I can get involved!
However you contribute to T1D research, know that you are helping to bring a new breakthrough to people with T1D. From 5-minute surveys you take on your phone to intensive long-term clinical trials, every step taken eventually adds up to a life-changing advancement.
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I have been looking for trials to participate in for years. I don’t fit the criteria for any of them.