T1D Early Detection and Screening
All About T1D Screening
Did you know there are three stages of Type 1 Diabetes? Most of the time, when people receive the diagnosis, they are in stage 3 and need to start on insulin. But, through antibody screening, it is possible to detect T1D antibodies in stages 1 and 2.
The benefit of early detection is time. Time to prepare and adjust. Time to explore clinical trials and FDA-approved therapies.
Wondering if screening is something for you or your loved ones to consider? Here are some numbers to mull over.
- An estimated 64,000 people are diagnosed with Type 1 Diabetes (T1D) each year.
- Nearly 90% of people diagnosed with T1D have no family history.
- Siblings of people living with T1D have a 1 in 20 risk of developing T1D.
- 62% of new diagnoses occur after the age of 20 (37% of those occur after the age of 30),
- The median age of diagnosis is 24.
- More than 50% of the people diagnosed with T1D develop the condition as adults.
- Adults often get misdiagnosed with type 2. Screening can help identify antibodies and ensure a correct diagnosis.
Want to know more? We will give you the full rundown on the Resource Hub.
Screening with a Family Connection
Do you qualify for a study? You might be able to get screened for FREE depending on your age and family history of T1D.
TrialNet
A free, research-based T1D early detection and clinical trial program for family members of people with type 1 diabetes. This network of experts has sites throughout the United States and T1D early detection can be done through an at-home kit or in-person. The program is available for individuals between the ages of 2 and 45 years with a first-degree relative (parent, child, sibling) with T1D, ages 2 to 20 with a second-degree relative (cousin, grandparent) with T1D, OR anyone ages of 2 to 45 years and have tested positive for at least one T1D related autoantibody outside of TrialNet.
ASK (Autoimmunity Screening for Kids)
Provides early detection for T1D and celiac disease for all children ages 1-17 years in the United States. No family connection to T1D is required to participate in the ASK program.
How to Talk to Your Insurance Company about T1D Screening
If you don’t qualify for a study, call your insurance company to learn more about what your coverage looks like, and give you estimated out-of-pocket costs.
(Tip: Even if you aren’t fully covered, there are labs that offer screening for lower costs)
We'll walk you through it all, just check out this resource: How do I ask my insurance about screening coverage?
How to Talk to Your Doctor About T1D Screening
Talk to your doctor about getting screened. Be sure to bring allllllllllllll of the facts with you and be prepared to advocate for yourself– screening for T1D is still new, so not all providers will be experts on the subject quite yet. Your doctor will need to request bloodwork for the 5 autoantibodies.
Here are some resources to help you with the conversation.
How to Advocate for Getting Screened
2024 Early Detection of Type 1 Diabetes (From our friends at Breakthrough T1D)
After You Screen
Once you’ve had your bloodwork done, it shouldn’t take too long to get your results. Be sure to reconnect with your doctor (call, send them a message through the patient portal, or make a follow-up appointment) to interpret the results. Your next steps will be different based on how many (if any!) antibodies are present, how old you are, and what your family history looks like.
We walk you through it here: Stages and Screening Episode #3: Antibodies, Test Results, & Next Steps
The Diabetes Link wants to learn more about your experiences with screening for Type 1 Diabetes. Your answers will help inform what we share in the future and assist us in advocating for the needs of Young Adults and their loved ones who are interested in screening. Please fill out this survey here: Tell Us About Your Screening Experience!