Would you want to know? Learn the facts about TrialNet
Many parents of a child with diabetes, or a parent who has diabetes themselves, ask the same question: Should I screen my other children, or my children, for the possibility of them developing diabetes?
The answer is complicated.
- Yes…I want to know and it’s for scientific research that may ultimately prevent future generations from getting diabetes.
- No…knowing the results (if positive) could be like having a “ticking time bomb,” and we would worry about it all the time.
There is no correct answer. This is a decision that is completely up to you. And before you do that, you might want to get all the information about TrialNet and their “Pathway to Prevention” study.
What is Type 1 Diabetes TrialNet?
Type 1 Diabetes TrialNet (TrialNet) is an international network of more than 150 centers in the U.S. Canada, Europe and Australia that is exploring ways to prevent, delay and reverse the progression of type 1 diabetes.
The Diabetes Research Institute at the University of Miami Miller School of Medicine has a TrialNet center. To make an appointment, call (305) 243-3781.
Who is eligible to participate?
Anyone between the ages of 1 and 45 years with a sibling, child, or parent with type 1 diabetes, or anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with type 1 diabetes. You might not be able to be in the study if you use certain medications, such as: medications to lower blood glucose; medications that affect your immune system; or steroids (this may include asthma inhalers). There is no cost for participation and fees for lab tests are billed directly to TrialNet.
What are the benefits of joining the Pathway to Prevention study?
Some people may wonder why their family should participate when only 3-4 people out of every 100 tested will have the antibodies. If only ~4% of tests come back positive, what are the benefits of participation?
Although the risk for type 1 diabetes may vary by ethnicity, if you have a family member with type 1 diabetes, your risk is still 15 times greater than if you had no family member with type 1 diabetes.
Although only ~4% of those screened may be positive for autoantibody markers, we need all families with type 1 diabetes to participate to move research forward and help find ways to prevent type 1 diabetes. By screening your relatives, researchers will closely monitor disease progression; avoid hospitalization if you develop diabetes, and you may be able to enter into a prevention study.
How will I be informed of results?
- If you test negative you will receive a letter in the mail in 4-6 weeks (96% of participants).
- If you test positive for one or more autoantibodies, you will receive a phone call from a study coordinator, who can explain which autoantibody(ies) were detected and what options you have for continued monitoring or whether you are a candidate for a prevention study.
The TrialNet Pathway to Prevention Study is divided into two parts or phases: Screening and Monitoring.
- Screening involves drawing blood and shipping the specimen to a core laboratory for assessments of autoantibodies that are predictive of the development of type 1 diabetes (T1D).
- Those who test positive are eligible to enter the Monitoring phase which includes a baseline monitoring visit at a TrialNet site to estimate the level of risk of developing T1D. Participants are followed-up either annually or semi-annually depending on their risk level.
Diabetes Intervention Studies
Specific study interventions are determined by TrialNet investigators. Every study in TrialNet follows a protocol that tells exactly how the research study is carried out. Each protocol is thoroughly reviewed by an Institutional Review Board (IRB) before approval is given to start recruitment to make sure the participant is fully protected and not exposed to unnecessary risks.
Learn more about the types of interventions studies>
Read an article that appeared in the Wall Street Journal about TrialNet>
Read about other families thoughts regarding participation in TrialNet:
At RollingInTheD blog>