A Beginner’s Guide to the World of Diabetes Research

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Katie Souris, Study Coordinator, University of North Carolina, Chapel Hill
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As a person living with Type 1 diabetes (T1D), I’m really grateful for research. Research has been the driving force behind many milestones in T1D, such as:

  • The discovery of insulin

  • Development of basal and rapid acting insulins

  • Invention of the insulin pump and continued development

  • Invention and continued development of the continuous glucose monitor (CGM)

Just to name a few.

The first research study I participated in as a person with diabetes was a study about diabetes and driving. After I was diagnosed with T1D during my freshman year of college, driving suddenly became so much more stressful. If I was low, I had to wait until my blood sugar came up to drive; if I was high, I felt sluggish and less alert. I thought that participating in the study might reduce my anxiety around driving and that it might help others too, but I wasn’t sure how.

Fast forward about 10 years and I’m working at the University of North Carolina at Chapel Hill (UNC-CH) as a study coordinator for research about T1D in young people. I get to work on a wide variety of studies, from behavioral interventions to mobile health app development. Before I got into the field, I had no idea how broad research could be or that it is a critical ingredient in technological advancements like those we’ve seen over the past few years in T1D. I didn’t know that research contributes to policy changes and that something called ’translational research’ can lead to positive changes for people with T1D soon - not just ‘in our lifetimes’ soon, but even in the next couple years.

Still, it’s taken me awhile to understand it; even living here in North Carolina’s Research Triangle, where everyone from the barista who serves me coffee to the musicians in the band I’m dancing to are getting their PhDs in research at a local university. Part of understanding research is understanding the purpose of different types of studies, and part is understanding the relationship between researcher and participant. So whether you’re considering participating or working in research (or both!), let’s start with the basics.

Components

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Research vocab:

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  • Epidemiological Study – study of the relationship between various factors and diseases in the population.
    • Example: SEARCH for Diabetes in Youth Study – a national, multi-site study initiated in 2000 that explores incidence, prevalence, complications, and impact of diabetes on young people.
       
  • Randomized Control Trial – Participants are randomly assigned to one or more groups and may receive a treatment (which could be a behavioral intervention); researchers measure effect/s of the treatment.
    • Example: Flexible Living Empowering Changes (FL3X) Randomized trial(1) – A behavioral intervention that aimed to help teenagers with elevated HbA1c levels improve glycemic control through multiple coaching sessions with a CDE trained in motivational interviewing.
       
  • Pilot Study - Pilot studies are necessary when little is known about a topic; they serve as an initial exploration of the hypothesis and test the feasibility of a larger study.
    • Example: Advancing Care for Type 1 diabetes Obesity Network (ACT1ON) Pilot – Currently, we don’t know what the best diet is for people with T1D who want to lose weight. In the ACT1ON Pilot Study, young adults with T1D are randomized to 1 of 3 experimental diets and meet with a registered dietitian multiple times over about 10.5 months. The study aims to help individuals manage weight and blood sugar at once. The ACT1ON Pilot is enrolling now! You can find more information and contact the researchers here.
       
  • Translational Research – Aims to move findings forward quickly into changing clinical care and impacting health policy. As a participant, it’s important to know about your rights and the benefits to which you are entitled.

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Key elements of research participation:

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  • Informed Consent – A key component of conducting and participating in research; the participant, sometimes called a ‘research subject’, must understand the activities, risks, and benefits of the study and consent to participate, usually in writing, before any study activities can occur. Informed consent isn’t just signing a form or a one-time interaction, but rather an ongoing conversation between participant and researcher.
     
  • Incentive –Incentives are a thank you from the researcher to the participant for their time and input. For various reasons, not all studies offer monetary incentives.
     
  • Randomization – Being randomized means that a participant is assigned to one group or another by chance, like a flip of a coin. Randomizing helps researchers avoid making conclusions about the effect of an intervention that might really be due to other characteristics of participants.
     
  • Before you decide to participate in a study, it’s important that you feel comfortable with all of its activities. You have a right to ask questions and have your questions answered, and you always have a right to stop participation at any time. All research is voluntary!

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Here are some resources where you can learn more about studies related to type 1 diabetes:

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1. Mayer-Davis EJ, Bishop FK, Driscoll KA, Hunter CM, Maahs DM, Seid M, et al. The Flexible Lifestyles Empowering Change (FLEX) Intervention Trial for Adolescents with Type 1 Diabetes—Primary and Secondary Outcomes. Diabetes. 2018 May;67(Supplement 1):155–LB.

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katie
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Katie Souris
Description

Although Katie Souris (second from left) does not enjoy wearing graduation caps, she did graduate with her Master’s of Public Health from the Health Behavior Department of the Gillings School of Global Public Health in 2017. Previously, she worked at the YWCA of Asheville as the coordinator of the Diabetes Wellness and Prevention Program. She is currently a research associate at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill, in the Department of Nutrition and the School of Medicine.