Summary: Type 1 Diabetes TrialNet is an international network of researchers who are exploring ways to prevent, delay, and reverse the progression of type 1 diabetes.
TrialNet Natural History Study
One question that comes up often with siblings is “Does type 1 diabetes run in families?” The answer is no. Families that have a member with type 1 diabetes do have a higher chance of another family member being diagnosed with it, but the chance is still so low that it is not expected. There is only about a 2 to 5 percent risk of a sibling also having type 1. For families who want to know, there are studies that can detect whether siblings, and other family members, carry the antibodies for possible development. The study, called TrialNet (www.diabetestrialnet.org) looks for three different antibodies.
According to their website, “Type 1 Diabetes TrialNet is an international network of researchers who are exploring ways to prevent, delay, and reverse the progression of type 1 diabetes.” The group is conducting two types of clinical studies in 18 centers in the United States and throughout the world, in addition to over 150 participating medical offices. The Pathway to Prevention Study “provide(s) information about risk factors associated with developing type 1 diabetes,” while the Diabetes Intervention Studies “test either treatments to delay or prevent the onset of type 1 diabetes, or test treatments to preserve remaining insulin secretion in people recently diagnosed with type 1 diabetes.”
Screening is a simple blood draw and is performed on relatives between 1 and 45 years of age who have a sibling, child, or parent with type 1 diabetes, and relatives between 1 and 20 years of age who have a cousin, aunt, uncle, niece, nephew, half sibling or grandparent with type 1 diabetes. With the blood draw, clinicians are looking for diabetes-related autoantibodies.
Our family was at a diabetes event where TrialNet was conducting blood draws. My husband and I opted to each get tested, though we chose not to test our four-year-old for a couple of reasons. First, having the diabetes-related autoantibody doesn’t guarantee that a person will develop diabetes in his or her lifetime, and we didn’t want to spend our lives worrying and looking for signs and symptoms. Some families want siblings to be tested to either give them reassurance that the antibody isn’t present or to help prepare them for the possibility. Second, we were at an amusement park and didn’t want to ruin our son’s day.
A month later my husband and I both received letters stating that we do not have the antibody. We were both happy to contribute to the clinical trial, and will let our son choose to participate when he is old enough to decide for himself.
I personally feel this study is important because the other aspect, the Diabetes Intervention Studies, is investigating ways to delay or prevent the onset of type 1 diabetes in those at risk and to preserve insulin production in newly diagnosed children.
If you’d like to learn more about the book, you can read more on the Kids First, Diabetes Second book page. It’s available widely in print and as an eBook from book sellers such as Barnes & Noble, Amazon.com, and IndieBound. And if you do read it and find it to be a valuable resource, I would greatly appreciate if you could write a review on any of the online retail sites. Thanks!
Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.