My Guide to Navigating Diabetes and Research Studies

I’m about one month into a study that involves T1D subjects and it’s been interesting, to say the least.

As far as I’m aware, nothing prevents me from going into more detail on what this study is, but I’d prefer to err on the side of caution and just provide the basics: It’s a 90-day study that requires me to wear a FitBit and answer two daily surveys about my sleep and exercise habits.

This isn’t my first rodeo with a diabetes-related study; in fact, I’ve done a dozen or so over the years with varying degrees of involvement. This might be the most intense one yet, though, because of its duration (most diabetes studies I’ve done have lasted a couple hours, at most). Since it is a more thorough study, it’s got me thinking about how I go about handling my diabetes when taking part in studies. Here are my tips on how to navigate the two in a way that reflects proper diabetes management as well as preserves the integrity of a given study.

It can be trickier than it initially seems to navigate around diabetes issues when participating in a research study.

Research the legitimacy of the organization conducting the research. I make every effort to find out who, what, when, where, why, and how the researchers will benefit from my participation. If it’s a well-formed study, then it’s pretty easy to find out all of this information because the organization will lay it all out before I can even sign up to be a participant. In my opinion, a research study that doesn’t tell participants what their data will be used for isn’t one worth doing.

Decide what I’m comfortable and not comfortable with sharing. Some studies can be quite…nosy when it comes to certain information. In the name of research (and ONLY in the name of research), I’m comfortable sharing some data like my weight, height, and even my A1c. I’m a little less cool with sharing, say, my entire medical history, and by that I mean that I wouldn’t do it. Some things I simply prefer to keep private so I always check in with myself before signing up for a study to make sure that I keep my comfort levels a priority.

Don’t be ashamed to ask about incentives. I can’t be the only one who has done a study in order to earn some quick cash. In keeping with the above statement about comfort/privacy, though, I haven’t done a study that I wasn’t comfortable with just to make money. But it’s definitely highly motivational when I’m in the process of learning whether I’m eligible for a study, and having a tangible reward given to me for my participation is inarguably nice.

Stop worrying about being judged for my diabetes decisions throughout the duration of the study. If I’m in a study that’s asking about my last 3 months’ worth of blood sugar levels or my last 6 A1c readings, I have to remind myself that I won’t be judged for the answers that I provide. After all, the researchers aren’t there to pat me on the back for doing a “great job” at “controlling” my diabetes or to scold me for not taking better care of myself. They are there to collect cold, hard data. So it’s important for me to remember that whether I’m an outlier, top-data-point, bottom-data-point, or something in between, it doesn’t make me any less of a human being with type 1 diabetes who tries her best each day.

Embrace the unique opportunities to make a difference. Not everyone I know has the chance to participate in research studies, so I view any research being done on type 1 diabetes specifically as a unique way for me to contribute to new discoveries (and possibly even a cure). Deep down, I’m a bit of a science geek who truly appreciates the methodology behind studies and experiments, so I really do think it’s special that I get to be a subject in some real-life research.

Monogenic Diabetes: Unlike the Other Types

It was the statistic that impelled me to learn more information:

“Approximately 1 in 50 people with diabetes have monogenic diabetes.”

Mono-what?

I was staring at the giant banner bearing this statistic in the exhibition hall of the Friends for Life Falls Church conference. I read it a few times before I finally walked over to the table at which two women were seated. One of the women was an associate professor at the University of Maryland School of Medicine and a human geneticist. The other woman was a typical T1D for several decades of her life before she received a proper diagnosis of monogenic diabetes. Ever since that revelation rocked her world, she’d gone off insulin and took sulfonylureas (a type of drug that stimulates the pancreas to release insulin) to maintain healthy blood sugar levels.

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Just how many types of diabetes are on the spectrum (hence, the rainbow color theme)?

Naturally, the whole concept was simultaneously foreign and fascinating to me. I wanted to know more.

As I discovered that evening, monogenic diabetes is best explained by its name. “Mono”, of course, meaning “one”, and “genic” meaning “relating to genes”. Therefore, it’s a type of diabetes that is caused by changes in a single gene.

Here are some “fast facts” that I learned about monogenic diabetes:

  • Most cases of it are misdiagnosed as type 1 or type 2 diabetes
  • Proper diagnosis of monogenic diabetes sometimes changes treatment from taking insulin to a pill, or no medications at all
  • There is an emerging clinical spectrum when it comes to genetic testing for diabetes. At the time of this writing, the following situations are when it’s recommended to undergo a genetic test to determine whether an individual has monogenic diabetes:
    • The individual received a diabetes diagnosis within the first 6 months of life
    • The individual’s diabetes does not follow typical characteristics of type 1 or type 2 diabetes – this might mean that the individual is non-obese or has a strong family history of diabetes
    • The individual has a stable fasting blood glucose between 100 and 150 mg/dL
  • From the pamphlet I picked up that featured stories from individuals with monogenic diabetes: “I was 21, taking metformin and aspirin daily and sitting in a type 2 diabetes class with three much older participants. Despite dropping my BMI from 26 to 23 my A1c had risen to 6.4%, not a high number, but certainly one worth watching. I knew of no one else in my family with diabetes. Eventually I did get that dreaded diagnosis, and because it didn’t seem to be type 1, they said it was type 2. Fast forward 2 years and my sister now had ‘GDM,’ (gestational diabetes mellitus) twice, my dad finally admitted to having ‘borderline sugars’ since he was in college, and I got my genetic results back saying I had GCK-MODY (GCK being a gene that can have a variant that triggers monogenic diabetes, MODY being maturity onset diabetes of the young). It changed everything: gone were the pills, gone was the restrictive diet and exercise plan, and when my son was born with high blood sugars, we did nothing, because he was like me, and there is nothing that needed doing.”

Now, if YOU are like ME, all of that might read like some mumbo-jumbo. It took a few weeks of me reflecting on it to decide whether I should even write this post, because I feared that it might cause some people to be paranoid about whether or not they were misdiagnosed with their diabetes (I admit that I was worried about that for myself in the days after learning about monogenic diabetes).

But the big takeaway here that I thought should be captured in a blog post is that it’s important for patients to advocate for themselves when things just don’t add up. There were a few more stories from individuals with monogenic diabetes in the pamphlet I got, and there was a recurring theme in all of them: Doctors kept telling these patients that their diabetes was atypical, but it wasn’t until these patients sought genetic counseling that they began to understand why.

It goes back to what I said at the beginning of this blog post: I find this variant of diabetes to be intriguing. It makes me wonder whether we should continue to define diabetes in such a black-and-white manner (either you have type 1 or type 2). I’m curious if diabetes is more of a spectrum of diseases that present similar symptoms, but require different levels of treatment and management. It’s certainly interesting food for thought, and considering that diabetes continues to be a semi-mystifying condition to many researchers and doctors, it won’t surprise me if future studies eventually uncover more types of diabetes.

Anyways, enough of my musings on genetic testing and speculations on how many types of diabetes are really out there. If you’d like to know more about monogenic diabetes, I was guided to several different resources. Check them out below: