TrialNet - anyone involved?

(katie.clark) #1

I was just wondering if there were other families out there involved in TrialNet.  http://www.diabetestrialnet.org/index.htm

We got involved after my oldest daughter was diagnosed.  I asked the pediatric endo on the day Ellie was diagnosed how we could have our youngest daughter checked. The dr. said we wouldn't/shouldn't want to know.  I wasn't happy with that, so we got involved in what was then called PANDA (and is now rolled into DAISY) out of the University of Iowa.

We found out that my husband has the high rish genes (go figure), and both of our daughters had the high risk genes (gotta love the genetics you learned in 8th grade).  

About 18 months ago, our pediatric endo clinic became a site for TrialNet and we joined (seems I'm always pushing them into new ideas - TrialNet, pumps on kids, CGMs on kids).  We knew we would go through the phases since we had results from PANDA.  Anyway, my youngest daughter is now in Phase III of Trialnet, meaning we go in for about five hours every six months or so. 

Our hopes are - with Anna's increased risk, if signs do start to show diabetes developing, we can be involved from the get-go in a prevention trial.   I would do anything to prevent Anna from developing full-blown type 1 diabetes.

 


For those who have participated - are you glad you did? Would you do it again if you could go back?  What do you hope to get out of participating the clinical study?

For those who have not - I'd be interested in your sharing your reasons so other families can make a decision for themselves.

 

(system) #2

Our 11 year old Son was diagnosed July 08.  We participated in the study in Oct 08.  Neither my husband nor I or our families have a history of diabetes in our family.  In Oct our 14 year old Daughter had her annual physical.  Her BS were a little higher then they would like to see.  So we were told to watch it by having her take her BS a couple times a week. They had us come back in two weeks and fast for 12-14 hours, and it was 126, so they pulled an A1C and it was 5.9.  I called TrialNet to see if we could get the results sooner.  Our results came back that none of us carried any of the antibodies they were looking for.  However we did not go into extensive testing and our Endo just said there is nothing we can do and to just wait and see.  We are to watch her, as 5.9 and no signs symptoms are not enough to do anything with. I will say TrialNet was super nice about getting us results ASAP after I sent them an emailing letting them know what we were going though.

(hralaa) #3

Hi - I have the TrialNet signature forms on my desk.  I was planning to have myself and my 13 year old Son participate.  But when I read the risks involved, I got concerned.  It states that if you are determined to be at Risk to develop D, your ability to keep or get health insurance could be affected.   While it is unlikely, your personal information is on file in multiple locations.  I am the provider of health insurance in our family.  I don't think I can accept any risk that either myself or my Son could be a determined at risk, then be unable to get insured.  Am I over-reacting?  I certainly want to help the cause but this is a scary proposition!

(system) #4

Sorry that I have not replied sooner, however you had me thinking.  I too am the Medical Insurance provider for our family. I was under the impression that TrialNet is an independent study and that you are assigned a number.  Insurance is not involved and is not notified. I talked with the University of Iowa Children's Hospital Dept of Pediatrics/ Division of Endocrinology TrialNet Representative today.  I explained our concerns and she reassured me that this is a private, independent study and that they don't even know who we are when it reaches their centers.  I think they have to put that terminology in there to cover their liability in case there was a possibility that you had told your insurance or that somehow they figured it out.  Also, the results are only shared with the families.  Resulsts are not even sent to the Endocronologist office.

Hope this helps.  If you would like I can share with you her information if you would like to talk with her personally.

(katie.clark) #5

Thanks for looking into this further IowaGirl.  I had it on my list to follow up on... havent' gotten there yet.  I remembered asking about it when we started the process several years ago and being satisfied with the answer we got. 

Also - we have group insurance, and group insurance cannot charge you more or not cover you for a pre-existing condition.   I grew up knowing I HAD to have group insurance coverage and thankfully, I've been able to be covered by either my plan or my husband's since I left my parents coverage after college.

(stilledlife) #6

My family did this and i am thankful that they did. Although no one else in my family had these factors for diabetes, I was glad to find out.

These people are very professional and go through many measures to make sure that your information is kept secure. I'd recommend it.

(hralaa) #7

I am glad you called too and felt more comfortable on this topic.  I imagine you talked to the person on the letter I have and I plan to call her before I sign.  I get a bit concerned as I am in the technology business and there are regular cases of confidential information being exposed either accidently or intentionally.   The document I am looking at does imply that until TrialNet is completed it is possible to link your code to your name or other personal identifying information.  (bottom of page 6 if you still have your form)   

(JanelleIS) #8

We had our daughter tested with TrialNet soon after her brother was diagnosed. Her results came back negative on the antibodies. We were glad we participated and had a very positive experience with TrialNet!

This may not be the right group in which to pose this, but since you have been discussing insurance...As the mother of a T1 college student, I really am concerned about when he leaves our coverage at graduation. It's almost an inordinate amount of pressure for Jacob to land a job immediately after graduation with no wiggle room unless he goes to grad school. He's covered until age 23 if he continues his education. What happens if, in this economy, there are no jobs?? Oy, I just can't hardly think about it. I know tons of other people are worried about this in this economy, too, and not just because of diabetes, but what happens with this preexisting condition? Is there some special government program that can cover him? I know there is private insurance that can be purchased...Well, if anyone knows anything, I'd love your input!

Thanks!

Janelle

(A-D) #9

Janelle,

 

Insurance can be a difficult and scary item.  In Ohio (I’m not sure if all states have this requirement) I know that the insurance companies have a required Open Enrollment period and that if you submit during that time frame they have to take you in some form or fashion.  It is usually at a pretty steep cost.  The one piece of advice I have for you is that you mail it all with a delivery receipt.  Years ago, I had some problems with paperwork reportedly never being received and I missed the Open enrollment period, after that, I always paid the extra money for the receipt.  Let me know if there is anything I can do to help.

 

Cheers!

 

A-D