5 Responses

  1. mark
    mark October 29, 2013 at 10:35 am | | Reply

    When will more information be presented on the natural breakthroughs that many doctors are now starting to use? Isolated items such as the isohumulones that so many medical doctors and naturopaths are having success with.

  2. StephenS
    StephenS October 29, 2013 at 11:20 am | | Reply

    As a clinical trial participant (in the middle of my second trial this year), I can tell you that I’ve experienced more than one reaction of “Wow… That’s Great! I could never do that”. Then, when I explain what my trial is about, they say “Okay, I could handle that– how do I get involved?”.

    My feeling is, if I can help move the needle toward better outcomes for PWDs, I’m in. I won’t tell you that they are all
    easy… some attention to detail is necessary. But participating in a trial is rewarding in many ways. Also, I wanted to tell you that my trial earlier this year did get together participants in a focus group at the end of the study to discuss our experiences. I found this helpful, and I think the sponsors of the study did too.

    Two other things: 1) I can’t recall ever seeing anything about clinical trials in any doctor’s office I’ve ever been in.

    And 2) Love the idea of clinical trial fairs! Especially if they also include participants who can share their experiences.

    And finally: I’m finding it easier to write about my clinical trial experience. At the start of my trials, I’ve tried to get as clear an indication as possible regarding what I can talk about and what I can’t. Obviously, some technology, etc. is proprietary to the company developing it, so it’s good to get the ground rules first. But I don’t see too much concern about what I’m writing. Of course, as always, with
    freedom comes responsibility.

    Sounds like your summit was a great experience… thanks for the recap!

  3. Lee
    Lee October 29, 2013 at 8:31 pm | | Reply

    It’s a great idea for patients to be involve as much as possible! It’s seems like this conference was a great success, keep up the good work!

  4. Amy
    Amy November 1, 2013 at 8:02 am | | Reply

    I cannot agree with StephenS’ two bullet points more. Doctors need to raise awareness with their patients, “Hey you would be a great candidate for this!” And the clinical trial ‘trade show’ seems spot on to me as well. Why not have some clinical trials (very short term) that could be conducted right then and there as well. Probably more along the lines of studies involving data collection, but still worth looking into imho.

    In addition the ‘dating site’ looks promising too. That is how I met my husband, maybe that is how I can meet my new pancreas too!

  5. Emily
    Emily January 7, 2014 at 4:27 pm | | Reply

    When I was diagnosed I entered a clinical trial testing ways to preserve remaining beta cell function. Although the trial was proven ineffective, I highly recommend getting involved in clinical trials. I now work for TrialNet, and more specifically, in outreach. Participation in clinical trials is extremely low-even outside of diabetes, and to me, that shows a misunderstanding of what is involved. For example, Stephen’s comment-the “good for you, but not for me!” attitude. My mission is to make sure people have complete knowledge of what is involved to make an informed decision. I have unfortunately met many families who were provided with misinformation on clinical trial participation and turn it down who otherwise would have participated.

    And to tie it all up with a quote from Jeff Hitchcock ” We all want a cure for type 1 diabetes. And we want the cure now. To show our support, we donate time and money to organizations that fund cure-related diabetes research. We participate in walks and bike-a-thons. We share our stories with friends and family members, and make videos imploring our elected officials to increase federal funding for diabetes research. But all that research funding is of little value unless we, the community of people living with type 1 diabetes, participate in the research by getting involved in clinical trials. Without us, the best researchers with the brightest ideas cannot make progress. Without us, there can be no cure.”

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