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Type 1 Diabetes TrialNet at Vanderbilt

Frequently Asked Questions about TrialNet
Screening: Type 1 Diabetes Risk

 Why haven’t I heard about preventing type 1 diabetes before? 

The tools to predict those most at risk of developing type 1 diabetes have only recently been developed. Antibodies that precede the development of type 1 diabetes can be detected in a simple blood test which can be drawn at Vanderbilt or shipped here from commercial labs across the country. 
 
Who should be screened for type 1 diabetes?
 
Close relatives of an individual with type 1 diabetes are at highest risk for developing type 1 diabetes. They should consider being screened. 
 
Why should someone be screened for type 1 diabetes?
 
The risk antibodies that precede type 1 diabetes can be detected months or years before actual damage to the insulin-producing cells of the pancreas occurs.  While there is currently no proven way to prevent the development of type 1 diabetes, at-risk individuals may have the opportunity to participate in diabetes prevention research studies.        
 
How much do the screening tests cost?
 
There is no charge to individuals for the screening. There is no bill to insurance companies. All of the costs associated with the research tests and medications are paid for by TrialNet
 
What are the specific tests done? 
 
Screening tests for type 1 diabetes are autoantibody tests specific for the development of type 1. We initially test for mIAA, ICA512, and GAD 65. These are three biochemical autoantibodies commonly found in the newly diagnosed type 1 patients. If any of these three are positive, we also test the same blood sample for ICA, a tissue antigen test that is more involved. The 5th autoantibody, a zinc transporter, was discovered in 2008 and is not yet included in our testing. 
 
Is genetic testing available? 
 
Yes, we test for diabetes-protective genes IF the person screened is positive for autoantibodies and participates in phase 2 of the Natural History study.
 
We have never had type 1 diabetes in our family until now. What is the likelihood of other family members developing Type 1?
 
Blood relatives have a 10 to 15 fold increase over the general population in developing type 1 diabetes. There is about 1 in 250 chance in the general population, and about 1 in 20 chance among close blood relatives. Both a younger age and closer blood relationship increase the chance.
 
Will my insurance company find out? 
 
We have privacy measures to prevent anyone other than you and our research team from knowing that you were tested and knowing the results of the tests. Insurance companies are not billed. There is no patient medical record generated for those not diagnosed with diabetes. Labs are coded and deidentified. 
 
How long does the visit take?
 
A consent and screening form must be completed. A venipuncture is done from the arm for 1 tube of blood. This is accomplished within 30 minutes for adults. Children may continue to be tested annually until their 18th birthday. The visit for children is often more lengthy because they need preparation and they may choose to use a numbing cream. 
 
How long until we get results? 
 
Letters from the TrialNet Coordinating Center should be received within 6 to 8 weeks for those with negative results. Those with positive results will receive a phone call from the Vanderbilt Eskind TrialNet research staff.
 
 
Why is there retesting every year for children under 18? 
 
As children grow, they continue to develop their immunity.   We want to check to see if their autoimmune system gets activated by new environmental triggers so that we can determine their eligibility for prevention research. 
 
If my doctor has been checking me for the development of diabetes, are those the same tests? 
Probably not. Most doctors check for the development of diabetes by checking blood sugar levels. Our aim is to prevent type 1 diabetes, therefore we hope to identify those most at risk months or years before their blood sugars are altered. 
 
Can I have my family members tested that are not my blood relatives (adopted, step-family, etc)? 
 
If you are concerned about your family members that do not have a blood relative with type 1 diabetes, it is important to discuss this with their physician. They do not meet the guidelines for this study established by the National Institutes of Health. 
 
How can I get my family members tested that live outside of this area? There are two ways to have family members tested that live outside of our area. First, we can arrange for them to go to one of our TrialNet affiliate sites for screening. Or, if they are willing to give phone consent and fax or mail back the consents and screening forms, then we can mail them a lab kit so that they can go to an area lab and Fed Ex the sample back to us. All lab and shipping costs are covered by TrialNet. 
 
Will changing my family’s diet and increasing their exercise prevent Type 1?
A healthy diet and lifestyle is good for everyone. But type 1 diabetes is an autoimmune disease, not caused by overeating or lack of exercise.

Vanderbilt: First in Nation

Breakthrough: Type 1 Prevention

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