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TrialNet - has anyone done it?

Discussion in 'Parents of Children with Type 1' started by Darryl, Nov 16, 2008.

  1. Darryl

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    Just wondering what TrialNet is about. If you have a sibling tested and the results are positive, do they do anything, or are the results for research only?
     
  2. Jordansmom

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    Yes we have participated in Trialnet. My husband was the only one who came up positive for two of the known antibodies. When there's a positive result, first they redo the test, because apparently it's a difficult test to complete correctly. If there are two positive results, they do an OGTT. If that's normal, they test everything again in 6 months. My DH was higher than normal but not in D diagnoses range yet.

    At each step they ask if you want to continue to participate. They also ask family members who are negative if they want to be tested again in the future (not sure how much of an interval-forgot to ask).

    ETA: The tests are for research only. If they find anything conclusive they refer you back to your own doctor and give you a ccopy of your results. There are different phases of the study depending on your results that you continue to participate in. Also they keep negative blood for future study (if you give permission), in case you turn up positive later.
     
    Last edited: Nov 16, 2008
  3. momandwifeoftype1s

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    We're waiting for Grant's results. He had a blood draw at Connor's endo's office on 10/21. If his results are positive, he'll do an IV glucose tolerance test in the hospital. If that is positive, my understanding is that he'll be given oral insulin to prolong the function of his pancreas or a placebo (scientific trial). We've enrolled him in the study because he's been having bed wetting accidents, wetting his pants during the day (unusual), thirsty, and he has a dad with t-1 and a sibling with t-1. The oral insulin is now available long-term for the study. It does not end after 5 years any more, so the prolonged function of his pancreas could be indefinite (potentially). We are hoping that Grant does not get a diabetes diagnosis before he starts the trial. His blood sugar tonight post meal was 144. My husband and I are both thinking that he's on the way to being diabetic, but maybe we're hypersensitive? It's hard to know until we get his results, which take 6-8 weeks. Ugh...

    This is the study that Grant is enrolled in http://www.diabetestrialnet.org/patientinfo/studies/oral-insulin.htm

    I wanted to add that I had my blood tested for Trialnet, but I had negative results.
     
    Last edited: Nov 17, 2008
  4. Ivan's Mum

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    our family of 4 did it and got the all clear then our youngest does it every year. Which reminds me that he's due to do it again by now so I better call. I'm all for helping out with research.
     
  5. Darryl

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    Thanks for the info...

    Does anyone know of cases where a person tested positive in Trialnet, and then was later diagnosed with T1?
     
  6. Momof4gr8kids

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    A member here named Brenda who is the mom of a child with T1 was tested through trial net, and later dx'd. I haven't seen her post much, but she was dx'd VERY early, and last I heard on very tiny amounts of insulin.

    I have been tested through trial net, and so have my 3 children without D. Joey, my 11 year old tested positive for antibodies the two required times. Once it's confirmed that antibodies are positive, you can go on to the next phase which is the OGTT. My son did the OGTT every six months for about a year and a half. We stopped because of the anxiety it caused.

    3 days before the OGTT a high carb diet (over 150 carbs per day) is started. At the start of this diet, Joey would start to worry about the IV (they insert an IV to take blood from, so they don't have to puncture each time they draw - they draw about every 20 min, or something like that for 2 hours).
    Joey hated the IV and it was quite a chore to get him to hold still, and keep the IV in.
    Then after the test, Joey would worry about the results until they came.

    Joey was not high enough to be dx'd with D, but he was offered oral insulin to help stop/delay the onset of D. Some studies have shown a higher rate of diabetes with oral insulin, and it has not been proven to slow, or stop D, so this didn't appeal, and we declined.

    We stopped because I could not fathom comtinuing all of this until the 5 year mark. It seemed like their prevention research wasn't going in a good direction, and the toll it was taking on Joey, and because of the toll it was taking on him, it would also be horrible for me, because it gave me something more to worry about, too. Now I was over worried about him getting D, but I was also worried about how he was reacting. It was too much for him, and too much for me. Joey has asked to do the testing (he wants to skip school, and have lunch with mom :rolleyes:, plus the $50 they pay), but I just can't. I know that people can be dx'd early with the testing and that is a bonus, but my daughter was dx'd early, because her dad has T1, and we knew the symptoms, so I don't really see that as a reason to do it. I think the majority of people catch the second dx a lot faster than the first, and catching D before one can take insulin isn't terribly helpful. JMO, I'm sure you'll do what's right for your family. It really is a noble cause.
     
  7. betty6333

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    We were all tested, (not ds w/D obviously) and we all tested negative for all antibodies. I needed to stop worrying about the other boys, so it was good. I am one of those people who would rather know than not.

    Some people would rather not know, so if you want to do it, do it,
    but having the antibodies doesn't mean you will get it and not having them doesn't mean you won't. :eek:
     
  8. Wendyb

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    We have done the testing twice over 2 years. We all were neg. for antibodies. However, in the PANDA portion, my non-d son was shown to be high risk. This meant that he had genetic markers that were similar to a child with T1d. This information helped me better understand the genetic link in our family. He con't to test negative for antibodies, which we do every year. They will follow him and make comparisons to other siblings who are also high risk and see who delvelops the disease vs those that do not. We will con't and hopefully our results will be helpful to someone down the road. It doesn't bother me knowing that my non-d is high risk...I think I knew that anyway.
     
  9. ADHDiabetic Mom

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    Yes, we tested our whole family. My daughter and I are clear, but my 8yo son has one of the four antibodies. We follow up with bloodwork every six months to see if things are progressing. At least if he gets it, we won't be blindsighted with it like we were the first time.

    Not everyone wants to know, but we do.
     
  10. ADHDiabetic Mom

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    I suppose it depends on how you feel about the test drugs and all, but it actually can be helpful to know ahead of time.

    Our TrialNet nurse has told us of several cases she has seen where a family member has tested positive for T1D before any symptoms show up. They were put on TrialNet's newest test drug, and it seems to have halted the progress of the D in its tracks. At least one of them, she says, has gone over a year without having to start taking insulin at all, and other have remained at the same dosage. Apparently, they are able to extend the honeymoon phase, at least with some people.

    Of course, it's all still in the test stages, and not everyone is comfortable with it.
     
  11. Darryl

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    Katherine,

    That's very interesting - did the TrialNet nurse mention what drug they are using?
     
  12. DylansMum

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    Yes, we were all tested the year Dylan was dx'd. Hubby and I were negative, so were the girls, but they go back each year to be tested. So far all results have been negative, they are due to get more blood tests done shortly.
     

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