Frequently Asked Questions
Screening through TrialNet:
Question: Who should be tested for type 1 diabetes autoantibodies?
Answer: Close relatives of an individual with type 1 diabetes are at higher risk for developing the disease (10 to 15 times the risk of the general population). In general, screening works better in higher risk populations. TrialNet offers free screening to many such individuals.
Question: Can I have my family members who are not blood relatives (step family, adopted, etc) tested in TrialNet?
Answer: No, such individuals do not meet inclusion criteria for this study.
Question: Why should my child or I be screened as part of TrialNet?
Answer: This is a personal decision. Some people participate to have access to other studies that are testing therapies that may delay or prevent the onset of diabetes. Some people participate for the peace of mind that comes with a negative test result or the closer follow up that is offered with a positive test. Some people want more information, are they high risk or low risk for developing the disease in the short term. Some people participate to contribute to the diabetes community--many important discoveries have already come out of TrialNet and related studies including better risk models and autoantibody tests. There is some evidence that early diagnosis may have a positive impact on disease course.
Question: I thought type 1 diabetes only happens in kids. Why should I get tested if I am an adult?
Answer: This is a common misconception. The reality is that less than half the people diagnosed with type 1 diabetes in a given year are under age 20 at time of diagnosis. This is why TrialNet offers screening until age 45.
Question: My child has type 1 diabetes, but nobody else in my family has the disease. Why should I be screened?
Answer: It is not unusual for a child to be diagnosed with diabetes before a parent develops the disease. Once an individual in a family is diagnosed, the risk for the entire family is known to be higher, it doesn't matter if you are younger or older than the person with diabetes, if you have a genetic link you may be at higher risk.
Question: If people get diabetes at any age, why does TrialNet stop screening at age 45?
Answer: Individuals under the age of 45 are at highest risk for developing diabetes autoantibodies. We therefore focus our screening efforts on family members who are 1 to 45 years old.
Question: Can I be screened if I’m pregnant?
Answer: Yes, however; you may not have further testing as part of this study while pregnant.
Question: My doctor has been checking me for the development of diabetes. Is this the same testing?
Answer: Probably not. Physicians generally screen for diabetes using measures of blood sugar. The screening in TrialNet is looking for diabetes related autoantibodies that may develop years before blood sugar becomes abnormal. Even if your physician tests for autoantibodies, there are different autoantibodies and different methodologies that are available. The testing done as part of TrialNet is highly standardized and considered the gold-standard against which other assays are measured.
Question: I would like to have my blood drawn at one of the partnered sites, do I need to be a patient there?
Answer: No, you do NOT need to be a patient at a given site to have your blood drawn there.
Question: We have participated in diabetes research in the past. How can I find out if my family has already been screened in TrialNet?
Answer: Call us at 1-888-813-8669 and we can help identify if you have already been screened through TrialNet.
Nuts and Bolts of Participation:
Question: How long does it take to get the results? How will I be notified of the results?
Answer: Letters for negative results should be received 4 to 6 weeks after the blood draw. Those with positive results will receive a phone call from a member of TrialNet 3 to 4 weeks after getting screened.
Question: How long does the visit take?
Answer: A visit consists of the consent process, completing a study questionnaire, and a blood draw. This is generally accomplished within 30 minutes. Visits with very young children may take longer, especially if numbing cream is requested. We also offer an alternative participation pathway with an on-line consent process and study questionnaire and then a blood draw. Such blood draw only visits generally take less than 15 minutes.
Question: How much does this cost?
Answer: There is no charge for screening via TrialNet. All of the direct testing associated costs including the phlebotomy are paid for by TrialNet (some of our partnered locations may charge for parking).
Question: Will my insurance company find out that I participated or the results?
Answer: Your insurance company is not billed for this testing. There is no patient medical record generated by participating, only the research records held by the study investigators. The only people outside of the study who will know are those that you choose to tell.
Question: How can I get my family members tested that aren’t local?
Answer: Testing is available through several mechanisms. First, we have partnered with a number of clinics and laboratories to offer local testing. Please check our website to see if there is a partnered facility in their area. Next, we can arrange for them to go to one of our TrialNet Centers or Affiliate sites for testing. Finally, we can mail them a test kit so that they can have the blood draw done by their regular physician or at a local lab and ship the sample back to us. All lab and shipping costs for test kits are covered by TrialNet.
Question: Why is there retesting annually for children under 18 years old?
Answer: As children mature they have new environmental exposures and their immune system continues to develop. Therefore, it is possible they could develop autoantibodies in the future, even if they tested negative previously. For this reason, we offer to test children each year until they are 18.
Question: If my child misses a year of screening, can he/she still participate?
Answer: Yes. They are eligible for annual screening until they are 18 years old.
Question: Do I get paid for participating?
Answer: No. There is no charge for screening via TrialNet, but there also is no compensation for participation in this study. Remuneration may be available for participation in other TrialNet studies.
Question: Do I need to be fasting for the screening test?
Answer: No. Fasting is not necessary.