At the CWD Friends For Life conference in Florida recently, we were told that there’d been more TrialNet screenings conducted than ever before — and this was true already at the end of the very first day!
TrialNet of course consists of an international network of researchers exploring the progression of type 1 diabetes. The study is as old as the CWD FFL conference itself — both are 13 — and this seemed like a great time for fresh look at how far it’s come and the difference it’s making.
We reached out to Dr. Henry Rodriguez, who heads the University of South Florida Diabetes Center and also leads the TrialNet affiliate there. I actually know Dr. Rodriquez from his years working on the diabetes research scene in Central Indiana, not far from where I live. While our D-Community was pretty sad to see him go, we were also thrilled to know that he’d be broadening his impact to touch even more lives.
He’s now chair of the “Pathway to Prevention” study that screens and observes relatives of type 1 PWDs (people with diabetes) to explore connections in how and where the disease occurs.
Today, we’re happy to hear directly from Dr. Rodriguez about what’s happening with TrialNet and how we can all get involved …
A Guest Post by Dr. Henry Rodriguez
Having just recently returned from the Children With Diabetes Friends For Life Conference in Orlando, where TrialNet screened more than 100 relatives of people with type 1, I am more excited than ever about the advances we’re seeing in this research! In just the last decade, type 1 research has led directly to earlier diagnosis and earlier treatment than we’ve ever seen before.
Just ask the Bellos family from Jupiter, FL, about how beneficial TrialNet’s risk screening is to them.
Back in 2007, Florida mom Dani Bello learned about TrialNet screening in the same year her son Max was diagnosed with type 1 at age 5. She was screened right away, wanting to help with the research in any way possible.
“When you have a child diagnosed with the disease, you feel like you don’t have a lot of control,” she says. “You want to do something to help.”
Her husband Adam, a physician, pushed to have their other children screened.
“I look at things from more of a clinical perspective. It’s scary to find out your child has a high risk of type 1 diabetes, especially when you have another child with the disease,” Adam says. “But not knowing is not going to help you or your children.”
A year later, the Bellos took their other two other sons to be screened. That’s when they learned that their then 5-year-old son, Grant, tested positive for antibodies that signal an increased risk for type 1 diabetes. “We very quickly transitioned from being upset to deciding to do whatever it took,” Adam says.
Grant is now 10, and he’s participated in the Oral Insulin Prevention Study for the past five years. He’s helping to test whether a capsule of oral insulin each day can help delay or prevent the onset of type 1 diabetes. Earlier studies suggest it might help delay the disease by a full decade in family members with high levels of antibodies, including those against insulin.
Adam says, “Grant is still healthy. He takes his pill every morning. He’s getting older, and blood draws are easier. He understands what he’s doing. And, if he develops type 1 diabetes, we’ll know at the earliest possible time. No surprises, no DKA (diabetic ketoacidosis), no ER, no ICU.”
Dani says enrolling their son in the Oral Insulin Prevention Study provides themwith a safety net. “We know we are doing everything we can to delay onset of this disease. Anyone with a child with type 1 diabetes knows every day you can delay it is a gift.”
“We all go to the University of Florida every six months. Our other children are in the Pathway to Prevention Study, so everyone gets tested.” explains Adam. “It gives us a measure of empowerment over a disease where you have little control.”
To me, that story is a powerful one that demonstrates how TrialNet touches lives.
TrialNet has screened more than 100,000 relatives of people with type 1 diabetes to date, but we need to continue to screen at least 20,000 people each year to reach our research goals. With the recent addition of an option to sign up online, the screening process is easier and more convenient than ever. You can find a TrialNet screening location using our online referral tool diabetestrialnet.org/screening. Or go to pathway2prevention.org and request a test kit by mail. Just complete the online consent form, and TrialNet will mail you a test kit to take to a local medical lab to collect a blood sample. The lab will send the sample to TrialNet’s lab for analysis. You will learn the results in about six weeks.
The question you may be asking now is, “Why should we enroll?”
The first and most important step toward prevention is screening family members for risk markers called autoantibodies. The screenings are offered at no charge to relatives of people with type 1 diabetes, who are 15 times more likely to develop the disease than the general population.
Knowing your family’s risk for diabetes gives you important information about your health. It also lets you know if you are eligible to take part in a prevention study. TrialNet is currently offering three prevention studies for people identified to be at risk: the Oral Insulin Prevention Trial, the Abatacept Prevention Trial, and the Teplizumab Prevention Trial.
If you’re not eligible to join a prevention study, you can still help. You can participate in the monitoring component of the TrialNet Pathway to Prevention Study, where you will be followed closely with periodic blood tests for the earliest signs of type 1 diabetes. TrialNet risk screenings are widely available at sites around the country and through an online site (pathway2prevention.org), where as mentioned, you can request a test kit by mail. A single blood test is capable of detecting the autoantibodies that signal an increased risk.
There may also be other TrialNet studies you can join in the future. In addition, you can help spread the word about TrialNet screening and prevention studies.
TrialNet screening is available to those who are either:
- 1 to 45 years old AND have a parent, child, brother, or sister with type 1 diabetes
- 1 to 20 years old AND have a niece, nephew, aunt, uncle, grandparent, half-brother, half-sister, or cousin with type 1 diabetes
So, please consider getting your family screened. Not only will you be helping yourselves, you’ll be contributing to the science that will ultimately find a way to prevent this disease.
Thanks, Dr. Rodriguez, for all the work you and your fellow TrialNet researchers are doing on this front. We look forward to learning more as the research continues, and we echo your call for PWDs and families to consider participating if they can.