With type 1 diabetes (T1D) technology and research at an all time hype, it’s certainly an exciting time for those of us living with the disease. I was lucky enough to hear Dr. Darrell Wilson, the type 1 diabetes TrialNet Principal Investigator at Stanford University Medical Center, speak a few weeks ago at a JDRF Type 1 Nation Summit on his research findings.
The Power of Numbers
Families understandably have a multitude of reasons for their lackluster engagement with TrialNet; I was a hold out for many years myself. In my unique position of living with T1D and having a child diagnosed with it as well, I was convinced that no news was good news – why would I want to know if my other child had positive antibodies too? I wasn’t looking for another reason to be consumed with worry.
That being said, research findings from TrialNet are available because of T1D’s family members that participate. Fear not, we’re converts now, and my child without T1D has been an active participant in TrialNet (once I was ready to digest whatever results would come our way). There’s power in numbers, and our family has been a contributing factor to the vital statistics for Dr. Wilson’s ongoing T1D research.
Dr. Wilson was clear as mud with regards to what’s causing Type 1 diabetes.
One of the most concerning areas Dr. Wilson spoke of was the increasing diagnostic trends of T1D. We may not know what the cause is, but there have been some theories laid to rest. Cow’s milk is no longer implicated as a causal factor of T1D. This wasn’t much of a surprise to me; my daughter and I were breastfed past 12 months of age – and we both have T1D.
What is TrialNet?
TrialNet performs free blood antibody screening in relatives of people diagnosed with T1D with the hopes of delaying and preventing the disease. In order for this program to meet their research goals, they need 20,000 participants per calendar year. Dr. Wilson stated “only 3-4% of those tested have positive antibodies“, but that doesn’t diminish the increased risk they carry; first degree relatives of those diagnosed with T1D carry a ten fold greater risk than the general public.
If a participant has negative antibodies that is subject to change at any point in the future. Participants under the age of 18 are screened yearly because of this.
To date, there have been 216,000 relatives of people diagnosed with T1D that have been screened at one of 200 centers over the past 19 years.
Dr. Wilson spoke about new diagnoses generating from an extended family with no remarkable history of type 1 diabetes. Here’s the genetic bummer – once diagnosed, now their family members fall into a new high risk category regardless of the fact that the newly diagnosed person had the same probabilities as the general public to develop T1D prior to their diagnosis.
If you have the following family members with the disease your chance is:
Dad – 8%
Mom – 3%
Sibling – 5%
Twin – 50-90%
Child – 3%
You can participate in TrialNet if:
- You are 1-45 years old and have a brother, sister, child or parent with Type 1 diabetes
- You are 1-20 years old and have a cousin, aunt, uncle, niece, nephew, half-brother, half-sister or grandparent with type 1 diabetes.
The study is testing for a handful of antibodies; it’s important to remember that the antibodies aren’t the problem, rather, they serve as a measuring stick of disease.
Read more about TrialNet at Shesugar: TrialNet Study Screens Relatives of Type 1 Diabetics