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?
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(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.