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    • 6 hours, 22 minutes ago
      Karen Newe likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 8 hours, 10 minutes ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these. I'm not interested and have not even heard of some of them. The fewer gadgets the better.
    • 8 hours, 10 minutes ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      How about “None of the above”?
    • 8 hours, 10 minutes ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these
    • 14 hours, 3 minutes ago
      John Barbuto likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      I agree with Molly. I’m moderately concerned because if I were extremely or very concerned, I just wouldn’t participate. I’m concerned for others who are brave enough to risk their own health for the sake of research and helping others.
    • 14 hours, 4 minutes ago
      John Barbuto likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 18 hours, 1 minute ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 18 hours, 2 minutes ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      For me, this is a hypothetical question. On the surface, I am not concerned, because it does not effect me . However, if I were seriously going to view this as a genuine therapy for me, I would be very seriously concerned about side effects and long-term effects or immune system response.
    • 18 hours, 2 minutes ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 18 hours, 2 minutes ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 18 hours, 17 minutes ago
      Natalie Daley likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 18 hours, 37 minutes ago
      ChrisW likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      Well the first person in this trial has been insulin-free for over 1-1/2 years and has been feeling fine. All 12 participants in this trial so far are off of insulin. The trial is now going to include people with t-1 diabetes and some kidney damage as this immunosuppressant (tegoprubart) has shown no toxic effects to islet cells or to kidneys. I will keep watching as the trial progresses. This question only asked if we had heard about it. I didn't see the question as an advertisement.
    • 18 hours, 44 minutes ago
      ChrisW likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 18 hours, 44 minutes ago
      Brian Vodehnal likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Concern is relative to outcome. Getting a five year reprieve on the daily management of T1D might be worth it.
    • 19 hours, 41 minutes ago
      Derek West likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      For me, this is a hypothetical question. On the surface, I am not concerned, because it does not effect me . However, if I were seriously going to view this as a genuine therapy for me, I would be very seriously concerned about side effects and long-term effects or immune system response.
    • 20 hours, 30 minutes ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 20 hours, 31 minutes ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Moderately as this is for others. I don't imagine being offered this myself.
    • 20 hours, 31 minutes ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      For me, this is a hypothetical question. On the surface, I am not concerned, because it does not effect me . However, if I were seriously going to view this as a genuine therapy for me, I would be very seriously concerned about side effects and long-term effects or immune system response.
    • 20 hours, 31 minutes ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 20 hours, 34 minutes ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 20 hours, 35 minutes ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      For me, this is a hypothetical question. On the surface, I am not concerned, because it does not effect me . However, if I were seriously going to view this as a genuine therapy for me, I would be very seriously concerned about side effects and long-term effects or immune system response.
    • 20 hours, 35 minutes ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 20 hours, 37 minutes ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      I just love your comments. 😃
    • 20 hours, 37 minutes ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 20 hours, 38 minutes ago
      Gerald Oefelein likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
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    Have you ever participated in a T1D focused clinical trial? Tell us about it in the comments!

    Home > LC Polls > Have you ever participated in a T1D focused clinical trial? Tell us about it in the comments!
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    Samantha Walsh

    Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.

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    31 Comments

    1. Lenora Ventura

      I was in the DCCT trial back in the 90’s

      0
      2 years ago Log in to Reply
    2. Molly Jones

      I incorrectly answered yes.
      I have only participated in research, not clinical trials for diabetes.

      2 years ago Log in to Reply
    3. Jneticdiabetic

      Yes, I participated in an early closed loop clinical trial in ~2007. 3 days in the hospital, hooked up to 2 CGMs, a pump, and a laptop to control insulin delivery. So cool to think how far tech has come since then. Auto mode in real life – no lap top required!

      1
      2 years ago Log in to Reply
    4. Ahh Life

      Not to succumb to that evil trait of cynicism but, . . . I somehow feel my entire life has been a T1D closely focused clinical trial. 🥱

      4
      2 years ago Log in to Reply
    5. Steve Rumble

      In the mid 80s I participated in a trial at the National Institute of Health that was investigating the effects of a medication on the capillaries of the retina, to determine whether the medication w/could help prevent diabetic retinopathy.

      2 years ago Log in to Reply
    6. Gerald Wertz

      I completed all of the trial papawork in person at the clinic. I was called 3 days later and told that I did not qualify because my A1c was too low. I was at 5.9 then. The clinical drug turned out to be Mounjorno.

      2 years ago Log in to Reply
    7. Gary Taylor

      Yes, for Medtronic as they were seeking further trial data for approval in several countries in Asia of their 680G and Sensor 2 AID system. This was also at the beginning of the Time In Range understanding of glucose control and we were part of that study also. All of this required me to travel to the International Diabetes Center in a Minneapolis suburb multiple times over a year.

      2 years ago Log in to Reply
    8. Gary Rind

      applied for a Vertex trial without immunosuppression drugs. my A1C was lower than the range they wanted for the survey.

      1
      2 years ago Log in to Reply
    9. Seth Arlow

      I had been on insulin pumps for over 20 years. I entered a drug trial on long acting injectables and found I had much better control with shots than with the pump. I have been on shots ever since, 15+ years.

      0
      2 years ago Log in to Reply
    10. Nevin Bowman

      No – I tried and everything was fine until they found out my A1C was less than 7 🙁

      1
      2 years ago Log in to Reply
      1. Dennis Dacey

        I can relate to that, Nevin.
        On one trial 3 years ago I was eliminated after a year of evaluation because my HbA1c was 3 percentage points too low.

        2 years ago Log in to Reply
    11. Carl Robertson

      I participated in the Faustman lab BCG trial.

      2 years ago Log in to Reply
    12. Bob Durstenfeld

      I participated in the trial for TANDEM’S CONTROL IQ, and several Dexcom G7 adhesive trials.

      2 years ago Log in to Reply
    13. Dennis Dacey

      I’ve participated in several trials over the years; some whuch proved successful for continuing and, more that didn’t work out as expected. Three of the “successes” were:

      1) A four year trial in the 1960s to determine if a Ruby LASER might work to contain Retinopathy. Later a few other eye experiments.
      2) In 1974 the development of the successful glycosylated hemoglobin test study; test later referred to by its chemistry symbols as HgA1c and HbA1c,
      3) 1977 – 1979 development [before digital BG meters] of what has now become known as MDI. Our work was validated through the Worldwide DCCT Study of the 1980s.

      2 years ago Log in to Reply
    14. Edward Geary

      PERL: allopurinil, fenophibrate, bone loss.

      2 years ago Log in to Reply
    15. Jen Serrano

      I met with and gave blood to Dr Faustman in Boston. It seemed so hopeful back in 2007ish.

      2 years ago Log in to Reply
    16. Judith Marged

      I have been a part of several clinical trials. One I was very happy to be a part of as it was for inhalable insulin. Unfortunately, the trial was halted midway through with the company deciding not to go forward with the product. I was very glad that Mannkind continued with their production and release of Afrezza, as I did super with the inhalable insulin as opposed to multiple injections.

      2 years ago Log in to Reply
    17. Sue Compo

      Years ago I supplied bloodwork. Happy to help

      2 years ago Log in to Reply
    18. Ann Auerbach

      The effects of hypoglycemia on the brain as measured by MRI as well as cognitive testing at Yale-New Haven hospital. Also, Dr Faust’s BCG trial in Boston, MA

      2 years ago Log in to Reply
    19. Ann Auerbach

      Faustman–not Dr Faust.

      2 years ago Log in to Reply
    20. Chris Axford

      In the 80’s I participated in a trial for early treatment for retinopathy. They did laser treatment on one eye and at end of study did laser on the other eye. Was given a pill or placebo to see if aspirin affected outcome. I developed an ulcer so was taken of off pill/placebo

      2 years ago Log in to Reply
    21. Anita Stokar

      No, but I was told by my endocrinologist that one may come up close to me that will focus a pump giving glucagon and insulin. If that trial does come close to my home, I might try that one.

      2 years ago Log in to Reply
    22. Lee Johnson

      Never seem to qualify!!

      2 years ago Log in to Reply
    23. Hadley Horton

      I participated in the clinical trial testing the effectiveness of Tresiba versus Lantus

      2 years ago Log in to Reply
    24. Kristen Clifford

      About ten years ago, I did a trial with a medication that was meant for T2Ds that they also wanted to maybe try on T1Ds. I don’t remember what it was called, and I don’t even know if it got approved. I just know it wasn’t a weight loss drug

      2 years ago Log in to Reply
    25. Paul McGuigan

      DCCT/EDIC, 39 years and counting.

      2 years ago Log in to Reply
    26. Maureen Helinski

      I participated in one for the essence sensor but it was just to see how the readings went on the device, not the sensor being inserted.

      2 years ago Log in to Reply
    27. Becky Hertz

      PERL, PERL-age

      2 years ago Log in to Reply
    28. Janice B

      U have been in Phase 1,2 and 3 trials. Sometimes with placebo sometimes with investigational drug. First trial I ever did caused some problems and couple of deaths- trial stopped and drug did not proceed. I had some lingering health issues but have continued to volunteer. The drugs that I trialed that made it to market are inhaled insulin. And an SLG1 inhibitor. I have also tested new meters and been in a focus group to review directions for devices to make sure the language and directions were easy to follow.

      2 years ago Log in to Reply
    29. KarenM6

      I just started one!
      It’s fascinating… the names of the chemicals/hormones they are testing elude me at the moment. It has something to do with what insulin tells the liver to do… I didn’t know insulin had another job in the body other than lowering blood sugar!

      2 years ago Log in to Reply
    30. Vicki Andersen

      Vertex Clinical Trial

      2 years ago Log in to Reply

    Have you ever participated in a T1D focused clinical trial? Tell us about it in the comments! Cancel reply

    You must be logged in to post a comment.




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