TrialNet: Testing Your Child's Risk of Developing Type 1 Diabetes

Patient Expert
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Here's a hypothetical: Do you really want to know if your child is at risk of developing type 1 diabetes if there’s nothing you can do about it?

I used to ask myself that, until I learned about TrialNet and ongoing research that has actually successfully delayed the onset of type 1 diabetes in children whose test results determined they had a high risk.

At this time, there are no current treatment methods to definitively prevent the onset of type 1 diabetes. But there are life-changing options.

First, here are the basic factors that can increase your child’s risk:

The Joslin Diabetes Center reported this study from the Harvard School of Public Health, by Dr. Warram, to determine a person’s risk of developing type 1 diabetes:

  • If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, one’s risk of developing type 1 diabetes is 10 to 20 times the risk of the general popula-tion. Your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it.
  • If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of de-veloping it by age 50.
  • The risk for a child of a parent with type 1 diabetes is lower if it is the mother who has diabetes. “If the father has it, the risk is about 1 in 10 (10 percent) that his child will de-velop type 1 diabetes — the same as the risk to a sibling of an affected child,” Dr. War-ram says. On the other hand, if the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to 1 in 25, and if the mother is over age 25, the risk drops to 1 in 100 — virtually the same as the average American.
  • If one of the parents developed type 1 diabetes before age 11, their child’s risk of devel-oping type 1 diabetes is somewhat higher than these figures, and it’s lower if the parent was diagnosed after their 11th birthday.
  • About 1 in 7 people with type 1 have a condition known as type 2 polyglandular autoim-mune syndrome. In addition to type 1 diabetes, these people have thyroid disease, mal-functioning adrenal glands, and sometimes other immune disorders. For those with this syndrome, the child’s risk of having the syndrome, including type 1 diabetes, is 1 in 2, according to the American Diabetes Association (ADA).
  • “Caucasians (whites) have a higher risk of type 1 diabetes than any other race,” continues the report from the Joslin Diabetes Center. “Whether this is due to differences in envi-ronment or genes is unclear. Even among whites, most people who are susceptible do not develop diabetes. Therefore, scientists are studying what environmental factors may be at work.

Having your child’s risk tested through TrialNet

While a person definitely does not need to qualify as “high-risk” for developing type 1 diabetes in order to develop it, getting your child’s risk assessed by TrialNet is free, it contributes to ongo-ing type 1 diabetes research, and it means she might be a candidate for diabetes prevention treatments in research.

What is TrialNet?

TrialNet is an international network of researchers who are passionately dedicated to “exploring ways to prevent, delay, and reverse the progression of type 1 diabetes.”

Once a year, until he or she is 18 years old, TrialNet will test your child’s blood for auto-antibodies.

In a nutshell: autoantibodies are a protein that becomes present in the blood if the body is attack-ing its own tissues. An autoantibody count of 1 or 2 means your child does have a risk of devel-oping type 1 diabetes, but of course, they may not develop it at all. An autoantibody of 3 or 4 or higher indicates that your child is very likely to develop type 1 diabetes.

This test can actually help predict if a person was going to develop type 1 diabetes even 10 years after the test is taken.

Here’s how TrialNettesting works

First, visit the DiabetesTrialNet.org website to find the nearest location to you. If it’s too far of a drive, call them to request the consent paperwork and testing kit be sent to you. Then you’ll take that kit to the nearest medical facility that works with Quest Diagnostics, which you can find at QuestDiagnostics.com.

“Those who test positive [for autoantibodies] are eligible to enter the monitoring phase which in-cludes a baseline monitoring visit at a TrialNet site to estimate the level of risk of developing T1D,” explains the TrialNet website. “Participants are followed-up either annually or semiannual-ly depending on their risk level.”

“All participants will have repeat testing for autoantibodies and HbA1c; those in the higher risk will be closely monitored with Oral Glucose Tolerance Tests (OGTT),” explains the TrialNet website. “Participants who initially receive annual monitoring will be followed with semi-annual monitoring if their risk level for developing T1D increases. Participants who develop diabetes may be invited to enroll in an early treatment study aimed at preservation of islet cell function.”

You are under no obligation to continue having your child tested after the first test. If you want to have them tested every five years, you can do that, too. It is entirely up to you and your family

To learn more, visit TrialNet.org.

Why I will have my own kids tested until they’re 18

My almost 3-year old, Lucy, was tested for the first time around when she was around two and a half years old. I eagerly requested a test-kit be sent to my house, but it took nearly four months for me to actually take it to a test center. I reasoned with myself that one blood-draw a year is nothing compared to what many children who face cancer and other illnesses have to endure. If they can do it, so can my toddler.

I thought it was going to be an experience full of screaming, wrestling, and endless tears, but it wasn’t. It was actually pretty easy.

The staff (doctor and nurses) at ClearChoice Urgent Care in South Burlington, Vermont, were incredible. Lucy cried, but for some reason, she didn’t fight anybody when we each gently held her to the table. She lay absolutely still. And they drew her blood in less than 10 seconds. I wish my own blood-draws were as effortless!

Then we gave her a cookie, and she forgot all about it.

After a month or two, we received results stating that she had zero autoantibodies. A tremendous relief, and yet, the next thought in my head was of course: well, there’s still plenty of time. That worry will never go away. But it is a relief to know that most likely, she isn’t going to develop type 1 diabetes as a toddler.

I do plan on having my other daughter tested when she’s at least 2 years old (that’s just my per-sonal preference), and they will both be tested annually until they’re 18 years old.

If they never develop type 1 diabetes, they will still be contributing to type 1 diabetes research by providing blood samples of children who don’t develop the disease, even though their mother has it. Every contribution has the potential to help prevent and cure this disease for good.