{Sunday Survey} Type 1 Diabetes TrialNet

by Leighann on July 31, 2011

Last week I asked:

How often would you like to interact with other families who have a child with diabetes?

This week I’m completely changing topics…

When I began reading other blogs written by parents of children with diabetes, I heard about TrialNet. Some parents were entering their non-diabetic children into the study and/or being tested themselves.

(And this is absolutely in no way judgment of other families for the decisions that they make. We all have our own reasons for what we choose to do or not to do. I support you in the decisions that are right for you.)

I thought long and hard about whether I would want to know if my other child had an antibody present that may or may not indicate that he may or may not eventually develop diabetes. We ultimately decided that we don’t want to know. However, when he is older, if he chooses to participate for the sake of the study, we would support him.

That being said, I am all for them taking a blood draw from my husband and myself in order to see if there is something in our blood that might help them figure this all out.

We aren’t located near one of the testing centers, so it hasn’t been convenient for us to get tested. But when we traveled to Chicago this summer for the JDRF Family Day, TrialNet was there and we were happy to get our blood drawn.

We were informed about the study, signed some paperwork, and had our blood sample taken. Easy peasy. Except that the person drawing the blood tied my tourniquet WAY too tight. Ouch!

A month later we received our results in the mail:

“The result of your screening test was negative. This means that no diabetes-related autoantibodies are present in your blood at this time. This is not a guarantee that you will never develop diabetes. It does mean that you are currently at a lower risk than if you tested positive.”

From the TrialNet website:

The Natural History Study is part of the TrialNet Type 1 Diabetes studies. The goal of this study is to learn more about how type 1 diabetes develops in “at-risk” individuals. Close relatives of people with type 1 diabetes are being studied in three steps (phases): Screening, Baseline Risk Assessment, and Follow-Up Risk Assessments. Participants in the Natural History Study may be offered the opportunity to enter into prevention or early treatment studies when these become available.

The purpose of screening is to identify people at risk for developing type 1 diabetes. Individuals at greater risk may be offered the opportunity to continue on to other phases of the Natural History Study to receive close monitoring for the development of diabetes. They may also participate in studies testing new treatments to delay or prevent the onset of diabetes. If participants develop diabetes during the Natural History Study, they may be eligible to participate in studies aimed at slowing the progression of type 1 diabetes.

My question this week is:

Have you entered yourself or your children in this study?

Create your free online surveys with SurveyMonkey, the world’s leading questionnaire tool.

(E-mail and feed subscribers click over for embedded survey.)

I’d love for you to give an answer to the poll and also leave a comment explaining your thoughts about TrialNet.

Have an idea for a Sunday Survey? Please let me know.

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{ 8 comments… read them below or add one }

1 Ann Onimous July 31, 2011 at 12:39 pm

Our son has been tested, and will be again next January. You can be tested once a year. I’m too old, and my husband is type 2, which is why we haven’t been. We did let Rick wait until he wanted to do it, though.

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2 Beth July 31, 2011 at 1:04 pm

After our daughter was diagnosed, both myself and our son were tested. My husband is a T1 as well. Our son has never had any autoantibodies present when tested, but I did. I just slid under the wire, I was 44 when tested. I continued with the second phase of the study, getting a 2 hour gtt every year. By the third year, I had a small amount of glucose impairment during the test. By this last year, my bg was 302 at the 90 minute mark of a 2 hour test and I had two autoantibodies present and was diagosed as a T1 a month before my 49th birthday. It was very early, I did not get sick or need to be hospitalized. I was able for 8 months to only need to correct for carb intake. I have now been on a pump since April and am doing well and loving the pump.

Getting tested by TrialNet was a good thing for me!

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3 Sylvia White July 31, 2011 at 2:59 pm

When my first son was diagnosed, my two other children and my husband and I were tested and everyone was negative. But my then 6 year old was diagnosed with type 1 six months later and immediately put on a pump (at my request since my other newly diagnosed son was on one). My daughter has had diabetes since 2006 and has been tested four times for antibodies and is always negative, but her other bloodwork (c-peptide and insulin levels, etc) indicates type 1.

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4 Beth July 31, 2011 at 3:06 pm

Sylvia, I know several families who’s children show no autoantibodies, but have T1.

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5 Annie July 31, 2011 at 7:28 pm

My 6 year old was diagnosed 4 months ago and so me, my husband, and my 3 year old participated in the TrialNet study 2 months ago. My husband and I came back negative but my 3 year old tested positive for all the antibodies they tested for. I honestly wish we wouldn’t have checked him because now I feel like we are just waiting for him to get it. Every time he asks for a drink or has to go to the bathroom, my heart sinks. We decided not to continue with the study until he is older. If he does get it, he will go through enough. I’m feeling overwhelmed enough with my 6 year old who is Type 1.

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6 Leighann August 1, 2011 at 6:57 am

Annie- That’s exactly why we didn’t test our son (yet). I already get nervous when he asks for a second or third glass of milk (that was one of our daughter’s most obvious symptoms). I don’t want to feel even more so that I’m waiting for the other shoe to drop.

Good luck. From what I understand having the antibody doesn’t mean that type 1 will develop. Am I correct in that?

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7 Lani August 1, 2011 at 12:58 pm

Brought my daughter to DCamp yesterday and there was Trial net. My husband and I were both tested. So glad I read your blog because I already knew about it when I saw the booth set up.

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8 Leighann August 2, 2011 at 9:35 am

Lani- That’s great to hear. I hope your blood draw was a little more comfortable than ours was!

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