Has anyone heard of the TrialNet,”
program? I have 2 little boys and I always wonder about the chances of them developing Type 1 diabetes. I have had type 1 diabetes since I was 14. I learned about TrialNet,
a nationwide screening program and study sponsored by the National
Institutes of Health. TrialNet tests blood for autoantibodies
associated with type1 diabetes (positive results for autoantibodies
indicate a high risk) and is available at nearly 200 centers. Unlike
screenings in doctors’ offices, the testing is free and available
to second- and third-degree relatives along with parents, children,
and siblings of people with type 1. If eligible, participants who test
positive for the antibodies may participate in a type 1 diabetes
prevention trial at a local clinical center. Those who develop
diabetes might qualify for a study on new-onset diabetes. The
research aims to further knowledge about how type 1 diabetes
develops, test ways to prevent type1 in high-risk people, and
minimize complications in those who were diagnosed early on. I have
an appointment to take my boys tomorrow afternoon. I just wanted to
see if anyone has tried or gone to this?
When my daughter was diagnosed, we all were tested through TrialNet. Her two sisters and myself came back negative and my husband was positive. He couldn't continue with the study because of a medication he takes. It was a relief to know my other 2 were negative. Of course I know that it's not a guarantee they won't develop T1 but at least they don't have an increased risk.
I looked at it this way, it's for science, it might not only help us, but the whole scientific community.. so I think if you're ready to find out the good/bad, then it doesn't hurt to be part of the study. Good luck whatever you decide.
I thought of getting my son tested, but then decided against it. They don't seem to have promising data on preventing or delaying the onset of T1 yet, so I didnt want to get bad news if I couldn't do anything about it. But, I can def see how someone would be interested!!
My parents have my 12 year old little brother in this (both my dad and I have type 1). He's already come back positive with elevated antibodies so he's going to move onto "Phase 3." Next step is to go in every 6 months and get an IV and do an glucose tolerance test and have blood drawn throughout (plus an A1c) and monitor his progression over the next few years. If he actually develops diabetes they'll segue him into beta cell preservation trials.
The annoying part is that the nearest clinic site where they do that part is 3 hours away. If you're interested in doing it you might check into where you'd have to drive if you advance in the study...if driving distance is going to influence your decision.
Other than that I don't really know anything about it.
I just heard about this through a friend! And I think it's awesome! I take my daughter every 3 to 4 months to get her tested for DT1 and I hate seeing her face when they do it! Im super excited to test her at the upcoming Walk for the Cure!!! Wish me luck! LOL