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    • 3 hours, 36 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 15 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 17 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 21 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 22 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 23 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 1 day, 23 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 15 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 15 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 17 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 18 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 19 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 21 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 21 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 22 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 22 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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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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