I just read a Facebook post saying that TrialNet is no longer offering yearly rescreening for autoantibody negative siblings. Apparently they lost their NIH funding. Does anyone know why and what’s going on?
First I’ve heard of it. Was it from a reputable source? I would have thought the enrolled participants would have heard about it from official sources instead of Facebook.
Pretty reputable: It’s on the TrialNet page itself
On one hand, I sort of get it. I mean, I’m not sure how much additional information they’ll get by screening more people to figure out time to progression. They’ve got pretty robust statistics. They know that for prevention trials, which aim to catch those with antibodies but no decrease in beta cell function, they probably aren’t losing a ton of people by not doing rescreening.
But for us, this was a chance to take a breath and relax about diabetes for about 3 months before we worried again about our other kids potentially getting it. I especially worry about my 1-year-old. He’s still not in the age cohort where negative autoantibody tests drop his risk down to almost baseline.
This post on their official Facebook page seems to back that up.
NIH funding has been seeing cuts in recent years, so it’s not terribly surprising.
What a bummer. My three boys are in it, and the results are always very helpful.
It seems to me that the entire value is to continue tracking those who are initially negative to learn to understand what prompts a shift to autoimmune responses… but hey what do I know…!
I’m in total agreement! It’s unfortunate that they don’t have the funding to continue, they were not only doing important research but also able to give peace of mind to many families