I've seen some comments and blog posts about TrialNet. How many of you have participated? Have you liked it? Been happy with it? I want to sign up for The Natural History Study. I completed the online screening this morning. I guess I wait for a phone call??? Just wanted to know your thoughts about it.Tuesday, November 24, 2009
What Do You Think?
I've seen some comments and blog posts about TrialNet. How many of you have participated? Have you liked it? Been happy with it? I want to sign up for The Natural History Study. I completed the online screening this morning. I guess I wait for a phone call??? Just wanted to know your thoughts about it.
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6 comments:
Our participation has only been through a bloodtest here and there. I have only heard good things about it. And my experiences have been good.
We are just in the beginning stages of this. We all just had our blood taken last week while we were in CA.
I am not sure what I will do with any results that come back. If any of us are positive, we will go back for more testing. I would like to hope/think that I will continue on like normal unless we see symptoms. I don't know how I will actually react.
If we are negative, I don't think the constant worry will go away. We will be getting Savannah re-tested every year. I hope that once she passes the age that Zane was dx I might not worry quite as much.
Maybe it will ease my mind, maybe not. I hope to at least be able to help their research along the way.
We are enrolled in it...well I guess I should say Morgan is. I think it's great for research purposes. As far as using it to "prepare" if she were to develop T1D...I'm not a fan. I think I would rather have it just hit us than to know it could be looming in our future and we just have to wait for it. That would be difficult. So I bank on the fact that by participating we are helping to find a cure. :-)
My family is enrolled. We tried 2 times to get Tyson tested, but they couldn't get the blood either time. I wonder how I would have felt when it would come back positive. I don't have any problems with the study, I think the reasearch is great! Dr. Swinyard is really wanting all his patients to do it if possible.
We participated in this blood test in October in order to determine if our youngest daughter, age 2, had the genetic markers that would indicate she is at risk for T1. (Our 4 year old daughter has had T1 for 18 mos.)
Our reasons for participating: in our minds she was already "at risk" being the sibling of our older daughter. If she truly had the markers we needed to know, just to be extra vigilant. But the main reason was that there was the chance her blood test could come back negative, and we could breathe some relief. It was negative. The letter states something like.."this doesn't mean Ava will never develop T1 diabetes, but that she is considered statistically unlikely to develop it." I cried at the mailbox for 5 min. before driving home.
If I had known with my older daughter that she was likely to develop T1, I would have recognized symptoms earlier than we did. For that reason it was helpful for us. We would recommend the study - our experience was very positive.
We participated in this study just this fall, and had a positive experience. We would recommend it.
Our main reason for participating was for our younger daughter, age 2. Results came back negative for the genetic markers - but we will likely continue to have her tested. The letter states something like "This does not mean Ava will never develop T1, but that she is considered statistically unlikely to develop it."
We T1 moms already consider our kids to be in the "statiscally unlikely" category, but it helped us breathe some relief for now. Good luck :)
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