TrialNet Tests Family Members to Find a Cure for Type 1

Did you know there’s a very simple screening test that can determine whether a close family member of someone with type 1 will also be diagnosed with the disease? And did you know this type of screening could ultimately help cure T1D?

TrialNet is an organization made up of physicians, scientists and healthcare teams at the forefront of type 1 research who are working to prevent and cure type 1 by screening family members who are living with the disease. We are the largest international network of T1D researchers in the world, offering risk screening and clinical studies that test ways to maintain insulin production before and after diagnosis.

One of our main goals at TrialNet is to understand the disease more fully so we can predict it, intervene early on and make a difference in disease progression. In order to do that we need to better understand the natural history of the disease, and we’ve determined that it doesn’t just begin when you get ketoacidosis or clinical diabetes – it occurs many, many years before.

There are actually three distinct stages of type 1:

Stage 1

Stage 1 is considered the start of T1D. Individuals test positive for two or more diabetes-related autoantibodies identified by TrialNet screening. The immune system has started attacking insulin-producing beta cells, although blood sugar levels remain normal and no symptoms are present.

Stage 2

Stage 2, like stage 1, includes individuals with two or more diabetes-related autoantibodies, but now blood sugar levels have become abnormal due to increasing loss of beta cells. There are still no symptoms.

Stage 3

Stage 3 is when clinical diagnosis typically takes place. By this time, there is significant beta cell loss and symptoms of type 1 diabetes are usually present.

Enhanced understanding of the three stages of T1D explain why screening is so important.

The first two stages can actually be identified by TrialNet screening prior to any symptoms. Our job is to identify the disease in its earliest stage and stop disease progression by preserving beta cell production.

It all starts with Pathway to Prevention screening – a simple blood test to determine where someone is on the path to T1D.

Pathway to Prevention screening is offered free to relatives of people with T1D. Through this screening, we can detect the disease in its earliest stages — often years before symptoms appear.  The screening can detect autoantibodies signaling the disease. When autoantibodies are found, we try to enroll those people in clinical trials to 1) prevent disease progression, or 2) monitor them for further disease progression.

If we can make earlier diagnoses and identify eligible individuals for participation in prevention trials, we can decrease instances of illness and death.

Our research shows that age plays a significant role in the rate of T1D progression. The younger the person, the faster the disease will progress, and we are now able to screen children at birth for genetic risk.

We’ve done over 75 studies in the last 10 years to intervene in the disease, and we’ve screened over 200,000 participants who fit the eligibility criteria. With more than 200 locations offering screening and the option to get a test kit in the mail, it’s very easy to participate and it’s completely free.

Eligibility Requirements:

  • Anyone between age 1 and 45 with a sibling, child or parent with type 1.
  • Anyone between age 1 and 20 with a cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with T1D.

Those under 18 who do not have autoantibodies can be retested every year.

If you are ready to take your first step on the Pathway to Prevention or would like more information, contact TrialNet at 1-800-425-8361, Monday through Friday, 8a.m. to 5p.m. (ET), or visit trialnet.org.

7 Comments
  1. No one in my family parents or grandparents or great grandparents ever had type1?

  2. My 8 yo son was diagnosed last month. I just had his sisters tested and am awaiting the results. No matter the results, I am glad to have a heads up on the disease’s possibility of showing up again in our family.

  3. 85-90% of new-onset patients do not have a history of type 1 diabetes. In the general population, about 1/300 in the US get Type 1 but in first degree relatives it is 1/20. That is why it is so important to have relatives tested. Not only can we assess risk of subsequently getting the disease, but we may learn about the mechanisms leading to the disease, potential causes AND enroll in studies aimed at its prevention. Thank you for posting comments

  4. I have been type 1 since I was 3 years old. My lastA1c was 5.7 and all of my A1cs for the last 20+ years have been in that range. I have 3 healthy children ranging in age from 3-9. I do not want to find out that they are sick before I can treat it, IF there is nothing I can do about it anyway. If I could find out and then prevent progression, I would do it in a heartbeat. I am just not prepared to mourn a diagnosis that could still be years away. I do not want to loose carefree. If I put 2 of my children who have SPD through a procedure that would be painful and terrifying for them, I would need a guarantee that I could at least put them in a trial to prevent diabetes. I would also want to review the data that the trial had already collected. I need to know that it would be worth it for my children.

  5. The goal of Trialnet is to enroll very high-risk relatives in trials aimed at the prevention. Only by finding out whether a therapy works, will we one day be able to prevent and cure Type 1 diabetes. Sadly, we have not found out a definitive way yet. That’s why we are doing the research. If your children were not at risk, we would reassure you. If at-risk we would enroll in studies aimed at its prevention as well as doing more studies to find out what causes Type 1 diabetes and mechanisms involved in leading to the destruction of insulin producing cells. We can prevent diabetes in mice and rats but not humans. Only by participating in studies, will we get there. Knowledge of can also reduce the frequency of diabetic ketoacidosis. The advantages of participation far out-way the disadvantages you express.

  6. I agree completely with Emily. Moreover, I don’t think the antibody tests are 100% accurate. For example, I was misdiagnosed with type 1 diabetes when genetic tests revealed that I am MODY despite having IAA antibodies at diagnosis. Unless you comprehensively understand a person’s genetics then you may be including patients in cure trials that will not work (negatively affecting the effectiveness of the research) and maybe even harming patients. In my opinion, this trial is only a good way to estimate (with a margin of error) just how many possible diabetics there could be in the US in the future. This way pharma and investors can estimate future insulin production/sales levels.

    • 1/20 relatives develop type 1 diabetes. Rarely is any test 100% accurate. If on insulin, insulin antibodies (IAA)do develop after a few days. MODY does occur in about 1% of all cases. If MODY, then relatives would not be eligible for TrialNet since not true Type 1. We are honestly trying to help and one day figure out a way to prevent and cure this disease

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