Sign Me Up

TrialNet = Awesome: Two Examples

Yale TrialNet report from Jack:

I had the best Halloween. L. (the study coordinator) asked me yesterday what my favorite Halloween candies are, and she brought me a king size bar of each one, and I guess a bunch of the nurses overheard us and so some nurses gave me giant candy bars too, and one nurse gave me a pumpkin spice latte because she remembered I like those, but it was from MacDonalds but it was still really good you should try it, and Dr. H (the study director) gave me one of those really nice lawn ornaments that dances and lights up. (<—???) Then Dad and I went into New York and we went to The Strand and they encourage browsing so I just read a bunch of books and Mom, I read what is like the best opening line of any book ever. (Yes? And it is…?) Oh, you want me to tell you. Let me see if I can remember how it goes. Okay it’s in John Green’s um…Will Grayson Will Grayson and I think it went like um…

When I was a boy, my father gave me some advice and it went like this: you can pick your friends, and you can pick your nose, but you can’t pick your friend’s nose.

Isn’t that just the best? And rrrrgh I have had to take Benadryl like EVERY day now for my rash so I’ve developed a very high tolerance for drinking disgusting things now so I don’t think I’ll have any trouble with the glucose tolerance test anymore.

Meanwhile, Joslin TrialNet email:

Dr. G informed me that Jack is now a part of a prevention trial and will complete semi-annual follow-up at Joslin Diabetes Center. I hope he is doing well and hasn’t experienced any side effects post-infusion. I also wanted to present an opportunity for you to continue with TrialNet. TrialNet has a study called Long-Term Investigative Follow-Up (LIFT). The purpose of this study is to see if there are any long-term benefits to study participants that have participated in previous TrialNet studies. In theory, we anticipate a benefit to you because your diabetes* was detected so early. However, we would need continued follow-up with you to prove this.

Participation in the LIFT study would involve a glucose tolerance test every 6 months. This will allow us to detect any additional metabolic changes over time – in a sense, we would be able to see if your diabetes progresses**. We are more than happy to coordinate this visit with Jack’s visits to Joslin for the prevention trial.

Sounds like LIFT study not drug trial, but still part of science. So choice is drive Jack–> Joslin for OGTT & read magazine or drive Jack–>Joslin for OGTT & read magazine + IV + yucky drink + $50 + be part of science.

*Shiver thrill: person refer Bigfoot have “diabetes”

**Implies some possibility not progress?

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4 responses to “Sign Me Up

  1. Given the choice between the two, I’d pick… a nose?
    Is there any reason why you didn’t do the study that Jack did – or are you “too far down the road” for an investigative trial like that? Is there a clinical trial that you can participate in?

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  2. Hmmm… not sure I understand all of this. I’ll have to do a little more reading. But as a clinical trial participant and PWD, let me say thanks for what you and your family are doing!

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  3. My 6-year old son says you CAN pick your friend’s nose! But I digress.

    It seems the official Joslin email drafter has a hard time telling you and your son apart. He/she also doesn’t realize that the acronym for “Long-Term Investigative Follow-up” is LTIF, not LIFT… but that’s really hard to say.

    Enjoy your dancing light-up lawn ornament. Hopefully, your neighbors will grow to accept it.

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