The Clinical Trial Experience

An extraordinary reason to be thankful this year

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Brian: Well, after an amazing five days, our artificial pancreas (AP) vacation is over.

Alecia: Boo. I have such mixed feelings now that we’ve completed the closed-loop part of the clinical trial. What was the biggest surprise for you participating in the trial (well, aside from my ruby sequin slippers)?

Brian: Well, Dorothy, hmm—biggest surprise. I’m hesitant to say I’m surprised it worked flawlessly, but at the same time I was surprised at how readily I conceded complete control of my blood sugar to an algorithm. Until I was hooked up to the DiAs, I’m not sure I fully realized what it would feel like.

I am also surprised how seriously I considered stealing the DiAs and running away with it.

Alecia: I told you we could have made a break for it! I loved REALLY seeing how everything worked. Looking at the graphs in the morning and seeing how my regular basal rate was broken up into micro-boluses was pretty incredible. I didn’t understand that part of it before the trial. Looking at an entire night’s worth of data in the morning and seeing how the algorithms gave either more or less insulin in such small amounts that kept my glucose levels steady was a true eye-opener.

I was also surprised how many people, beyond the team in the next room, were monitoring us. Doctors involved in many parts of this study were checking in and watching our numbers! Amazing.

Brian: I know! Aside from those in the rooms with us, there were people watching us remotely!

On the last night, my blood sugar was cruising down to the low range when we turned on the closed-loop; it coasted down to 80 mg/dL then slowly rose right back up to the low 100s. I can’t impress upon everyone enough how well this technology works right now. It makes me want to work and fundraise harder because our trial data isn’t enough—we need so much more.

How has this impacted how you feel about your T1D future? What does this mean for Alecia Wesner as a person with T1D, a JDRF board member and fundraiser (and rock star)?

Alecia: As for my T1D future, I learned so much during each day of this trial, and I want that to continue. Getting an inside glimpse of the technology working on my own body was breathtaking. The industrial designer aspect of my life makes me want to talk to all the developers about the software involved in our study. I would LOVE to be involved in future steps with the AP however I can.

I’ve also realized that more data needs to be collected through clinical trials. As a person with T1D, I saw firsthand how differently our bodies reacted to different types of carbohydrates and fats and how our insulin requirements varied. YET, at night, the AP kept us both in range. There was a night one of the doctors snapped a photo of the screen they were watching us on. Our blood glucose levels were the exact same number.

IMG_0474-shoppedWhen it comes to my role with JDRF, I’m more encouraged than ever to see the AP become a reality through fundraising for grants and advocacy. Sharing our incredible experience is vital to future progress.

Brian: I am so encouraged. And with Thanksgiving coming up, I’m so thankful for those at JDRF and UVA and Mt. Sinai and everywhere else who are working tirelessly on this stuff. I am thankful that I got to participate. And I am thankful that I got to do this with such a good friend, who came to the trial with plush pancreases for us.

IMG_0364Alecia: It is heartwarming to see the dedication of all the people involved in these trials who are bringing this technology to fruition. The UVA and Mt. Sinai teams, the programmers, and especially JDRF are really making this happen. Like you, I too am grateful for this adventure. I also am so very thankful to have you, as my buddy, there at the same time and that we got to share this experience. I also may start Skyping with your parents.

Brian: Only if I get to Skype with your dog.

Read Brian and Alecia’s previous blog posts.

Two “lat rats” discuss their upcoming artificial pancreas trial
The best interrupted night’s sleep ever


JDRF’s Clinical Trials Connection provides people affected by type 1 diabetes (T1D) and its complications with up-to-date information on clinical trial participation opportunities.

Clinical Trials Connection is an online service that allows you to “opt-in” to get information about trials, and access to them. It contains information about all currently active diabetes trials in the U.S and U.K. Based on the criteria you choose, the connection provides you with information about selected trials and how to contact the researchers conducting them. You can also choose to receive regular updates so that you’ll know when new trials that meet your criteria become available. If you find a trial that interests you, you can discuss it with your doctor and also contact the trial’s primary investigator with any questions or concerns.

12 thoughts on “An extraordinary reason to be thankful this year

    1. Marlene Landry

      Dr Robev

      I think the purpose of the article was for two people with T1D to share their clinical trial experience – to express their enthusiasm for the trial, the process, what they learned and the hope that this trial will produce great results.

      I hope those (clinicians, physicians, lab technicians and more) who have worked to see this trial get to this point are not merely interested in accolades, but more in seeing their results have a positive impact on patients with T1D.

  1. Rob Nevins

    I have T1D and was very excited to see that people are working to make T1D to TYPE NONE!!! I am deathly afraid of needels to the point where my girlfriend has to give me my shot. I will be asking my doctor about getting one next month. THANK YOU FOR ALL YOUR HARD WORK ON MAKING T1D TYPE NONE!!!!!

    1. Profile photo of GinaGina

      Hi Ruth,

      Here is some information about clinical trials.

      JDRF’s Clinical Trials Connection provides people affected by type 1 diabetes (T1D) and its complications with up-to-date information on clinical trial participation opportunities.

      Clinical Trials Connection is an online service that allows you to “opt-in” to get information about trials, and access to them. It contains information about all currently active diabetes trials in the U.S and U.K. Based on the criteria you choose, the connection provides you with information about selected trials and how to contact the researchers conducting them. You can also choose to receive regular updates so that you’ll know when new trials that meet your criteria become available. If you find a trial that interests you, you can discuss it with your doctor and also contact the trial’s primary investigator with any questions or concerns.

      There are also a number of other sites that provide links to clinical trials for people with T1D (please note that trials from all the sites below will appear as results in Clinical Trials Connection):

      The National Institutes of Health clinical trials site features a comprehensive listing of federally and privately funded trials.
      The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) provides listing of clinical trials specifically involving type 1 diabetes.
      Diabetes TrialNet is a group of studies looking at the prevention and early treatment of type 1 diabetes. Its trials focus on new-onset and at-risk patients. (UK and US)
      The Immune Tolerance Network (ITN) conducts clinical trials and tolerance assay studies relating to new-onset type 1 diabetes. (UK and US)
      Center Watch is a website dedicated to providing patients with information on clinical trials throughout the country. It features geographic listings of current trials regarding type 1 diabetes.

  2. Profile photo of carol1024carol1024

    My husband had a full Pancreatectomy this past August 28th, Now he is a full type one diabetic. He had been in a familial Pancreatic Cancer study at Johns Hopkins for approx 10 years having lost both siblings to the disease. He developed cysts in his Pancreas deemed pre cancerous and the choice was made, after one began changing, to remove the entire pancreas as the cysts were present in all sections and the opinions were that if one was going bad the rest would follow. We would love to know how or when this artificial Pancreas might be available. My husband could enjoy his “Golden Years” without having to deal with constantly sticking himself as he is still trying to get glucose levels under control while also trying to heal the wound from his incision..

  3. Elizabeth Romero

    I’d like to apply for test trials. 56, overweight and very tired of not being able to control my numbers. I’m even looking into having my teeth wired so I can lose weight in an effort to control my numbers.

  4. Scott Garrison

    I’ve Type One Diabetes since age 8.I’m 53 now and would love to volunteer for clinical trails.I am onm an insulin pump now and ahve been for the last 15 years.I worry that as I get older memory problems may become a factor in using the pump not to mention the wonderful feeling of not having to constantly check sugars and the constant battle of controlling my blood sugars,The lows are becoming more and more unnoticeable I think due to symptoms not being as easy to recognize anymore. Anyway, I hope this breakthru changes all Type 1 diabetics young and old. Thank the researchers for all they have done over the many many years.

  5. John

    Bottom line, when will this make it to the bedside? The JDRF lives their headlines but it doesn’t make it to the bedside for whatever the reason. I’m sure this will be no different. how about a non-invasive technology instead of another band aid.

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