Outcomes Research with Our Registry

Our mission at T1D Exchange is to improve the lives of people living with type 1 diabetes (T1D). A large part of how we accomplish this mission is through research.

At the T1D Exchange, our Outcomes Research team collaborates with leaders in the T1D space and with other internal experts to design studies to understand the preferences, experiences, and quality of life of people living with T1D in our T1D Exchange Registry and Online Community.

If you are a part of the Registry, you’ve likely seen study opportunities pop up on your dashboard. You may have even participated in some of these studies! And you may have wondered, what happens after you participate?

Here, we’ll highlight the results of one of our recent studies on experiences with and attitudes about autoantibody screening: Autoantibody Screening Attitudes and Experiences in People Affected by Type 1 Diabetes. These findings were presented at the American Diabetes Association’s 2023 Scientific Sessions in San Diego, CA.

What is autoantibody screening for T1D?

Although we are learning more each year, T1D is generally thought of as an autoimmune disease. For many autoimmune diseases, including T1D, it is possible to detect markers or proteins through a simple blood test, sometimes called autoantibody screening. When a person has T1D-specific autoantibodies, they may be at higher risk of developing T1D in their lifetime.

A single autoantibody detected means someone is at slightly higher risk of developing T1D (or potentially other autoimmune conditions). Two or more autoantibodies detected means someone is very likely to develop T1D at some point in their lifetime, although it doesn’t give information as to when.

Why screen for T1D autoantibodies?

One of the biggest risks of a T1D diagnosis can occur before a person is diagnosed. Early signs of T1D are easy to overlook and may be confused with other illnesses — like the flu or another virus. Because of this, many people with T1D are initially misdiagnosed with another illness.

When this happens, a person can develop a life-threatening condition called diabetic ketoacidosis (DKA). With little to no insulin being produced, glucose is unable to leave the bloodstream and enter the body’s cells for energy. Instead, the liver begins to break down stored fats for energy which releases acids (ketones) into the body.

The hope is that through testing people will become more aware of their risk. This is especially true for those who have T1D autoantibodies. Screening can reduce the incidence of and/or prevent DKA by ensuring at-risk individuals know the signs and symptoms of T1D and can advocate for themselves.

And now, for the first time, there are new treatments available that may help delay or prevent T1D from progressing in individuals before symptoms develop.

With these advancements in therapies, screening for T1D autoantibodies is more important than ever. But, while we know that there are a lot of benefits to screening, research is unclear, or nonexistent, about how people perceive T1D autoantibody screening, their experiences, and their intentions or desires to have their children (or themselves) screened.

Together with our sponsors at Janssen R&D, LLC, we designed a study to understand these various experiences and attitudes about T1D autoantibody screening in people affected by T1D. Importantly, this study recruited people prior to November 2022 — which was before the FDA approved teplizumab to delay the onset of T1D.

T1D Autoantibody Screening Experiences and Attitudes

Study Overview

Because people who are biologically related to someone with T1D have a higher risk for T1D, we recruited and enrolled three groups of people.

Adults with T1D themselves who:

  • Had a biological child without T1D, OR
  • Planned to have a biological child in the future

Caregivers or parents of a child with T1D who:

  • Had at least one other biological child without T1D

First-degree biological relatives to a person with T1D who:

  • Were related to and referred by a participant in the T1D Exchange Registry
  • Had no diagnosis of T1D themselves
  • Had no biological child diagnosed with T1D

Our goals for this study were to describe in each group how familiar people were with autoantibody screening in T1D, how they felt about autoantibody screening, and what their previous experiences with autoantibody screening were.

Adults with T1D and caregivers were asked about screening their child (without T1D) for autoantibodies, while relatives were asked about screening themselves for autoantibodies.

Summary of Results

In the graphic abstract below, you’ll see an overview of our findings.

Our poster from the ADA 2023 Scientific Sessions: Autoantibody Screening Attitudes and Experiences in People Affected by Type 1 Diabetes.

In total, we had 510 participants: 216 adults with T1D, 216 caregivers, and 78 relatives.

Most participants rated themselves as only “a little” to “somewhat” knowledgeable about T1D autoantibody screening. In our sample, caregivers reported the highest levels of knowledge, rating themselves on average as “somewhat” knowledgeable.

Across all groups, most people felt positively about T1D autoantibody screening in general. Yet, despite these positive attitudes, not many participants had their child (for parents/caregivers) or themselves (for relatives) screened.

Caregivers reported the highest levels of screening for their child without T1D, but there were still fewer than half (44%) who had screened their child.

Among those who had not screened, there was a lot of variability in terms of whether they planned to screen their child or, for relatives, themselves. Nearly half of adults with T1D indicated they would “probably” or “definitely” screen their child for autoantibodies, but fewer caregivers, and even fewer relatives, indicated they intended to screen.

Conclusions and Implications: The “So What?” Summary

The takeaway from this study highlights the need to increase awareness about screening and provide additional resources so people can make informed decisions about T1D autoantibody screening.

One of the most promising findings — at least in our sample — was people did feel positively about screening for T1D autoantibodies. At T1D Exchange, we are hopeful that with effective treatments like teplizumab becoming available, they will help to bolster positive attitudes.

That said, our findings still highlight that more research is needed, as generally very few people have been screened for T1D autoantibodies. We will be looking further into why this is occurring, so we can provide better recommendations moving forward.

Do you want to participate in diabetes research from home? Join the T1D Exchange Registry by filling out a short, online survey about everyday life with T1D. Once enrolled, we will let you know about other T1D research opportunities like surveys, focus groups, and clinical trials.