You may have read on ASweetLife last week about how ten members of the Team Type 1-SANOFI running team are currently running across the country (yes, the United States) to raise awareness of Type 1 diabetes. They started last week and are due to finish on World Diabetes Day, November 14.
But what you may not have heard about is TrialNet’s partner initiative to screen 3,000 people — one for each mile Team Type 1 is running — for increased risk of Type 1 diabetes. I’ve written about the importance of this screening (and of an exciting new trial led by Dr. Kevan Herold at Yale) in Popular Science. But here’s the basic gist: it’s now possible to predict with more than 75 percent accuracy whether someone will develop Type 1 within the next five years (it can sometimes predict it up to 10 years out). TrialNet offers free screening to anyone with a relative with Type 1 (since having a relative with Type 1 gives you a 15-fold increased risk of developing it yourself). If they get 3,000 new participants, it will bring the total number of people involved in TrialNet’s research programs to 100,000. That’s pretty amazing.
The tricky part of the decision to get screened is, of course, the question of what to do if your results come back positive. At the moment, there’s no definite way to prevent Type 1. But I strongly believe that it’s still worth doing. Not only will it make you much more attuned to the signs of Type 1 if and when it develops (reducing the time you spend dangerously hyperglycemic), but you have the chance of signing up to participate in a research trial to find an effective prevention. The study I mentioned above, for example, is investigating whether teplizumab, an anti-CD3 monoclonal antibody that’s been studied for more than 25 years (I myself did a study with Herold right after being diagnosed that used the same drug, and have managed to retain a bit of beta cell function for over a decade) might help prevent Type 1 from developing in the first place. Very exciting.
The screening will obviously be much more appealing once we actually figure out a definite way of preventing the disease, but we’re never going to reach that point if more of us don’t step up to the plate now. And, as a personal benefit, it gives you access to and care from some of the country’s leading diabetes experts. Having gone through a research trial myself, I can say without a doubt that the experience was worth it.
Having also spent the summer after my diagnosis biking across the United States (for Habitat for Humanity), I can also say that a. this country is really freaking big, and b. those runners deserve all the support and admiration we can give.
If you’re interested in participating in TrialNet’s initiative (just for the screening; the research trial are separate), here’s some more info:
TrialNet risk screening available virtually anywhere
TrialNet risk screening is available at nearly 200 sites across the United States or anywhere via mail. You can find a TrialNet screening location by completing the online screener. To request a test kit by mail, just contact one of our clinical centers listed here. The test kit can be taken to a local doctor’s office or lab to collect a blood sample for analysis by TrialNet’s lab. Risk screening is available at no charge to those who are:
- Age 45 and younger who have a parent, sibling, or child with type 1 diabetes, or
- Age 20 and younger who have a niece, nephew, aunt, uncle, grandparent, half-sibling or cousin with type 1 diabetes.
A quick addendum: yes, this means that if you have Type 1, you can get your kid(s) tested for free.