Clinical trial participation: The one helping the many.

This post is appearing today over at the Diabetes Community Advocacy Foundation website.
 
 
Clinical trials… what’s the big deal?

Everyone knows that clinical trials are important.

What about clinical trial participation?

Full disclosure: I’ve participated in three clinical trials in the past year, the last testing an artificial pancreas device. More on what that means to me below.

There’s absolutely no question that research and discoveries that happen as a result of clinical trials is of great importance to all of us living with and affected by diabetes. That means that participants in clinical trials are a vitally important part of the research and development process. Critical clinicals, if you will.

Don’t believe me? Think about the important discoveries that would not have been made available to the general public without the assistance of clinical trial participants. Insulin pumps, continuous glucose monitors, meters and test strips, long-acting and fast-acting insulin. Better syringes, infusion sets, reservoirs, and sensors. None of these could have made it to our D-lives without clinical trial participants who made it their mission to try them first.

Those are just the good ideas that made it through the testing and approval process. What about the bad ideas? If not for clinical trial participants, bad ideas would… well, I don’t want to think about it. Let’s just say that without patients willing to play an active part in discovery, we might not know the good ideas from the bad ideas until it was too late to do anything about it. As one of the doctors on my last clinical trial put it, there is no bad data. All data is good if it helps us get to a great conclusion. Who is the source of that data? Right… patients who participate in clinical trials.

Need another reason to participate? How about the great feeling that comes from taking an active part in making things better for people living with diabetes? Many of us don’t have the resources, the networks of supporters, or the money to take on meaningful advocacy initiatives on our own. But your participation in a clinical trial means that you, just one person, can help make a difference for more people than you’ll ever know, and for a long time to come. Oh, and the money thing: Many entities compensate patients for participation in clinical trials. Don’t expect to get rich. But if you need an extra incentive, there it is.

In addition, patients who participate are screened thoroughly prior to the start of any study. Once the trial is underway, doctors and nurses watch you closely. Partly to see how the research is going, and partly to make sure that you, as a patient, are free from adverse reactions or unintended consequences of whatever is being studied. The goal of testing is never to have the study team watch you get worse. If you don’t feel comfortable participating at any point in a clinical trial, you can always opt out at the very moment it begins to be too much.

I can think of no other form of diabetes advocacy where one person can have such a profound impact on the future for so many people. For me, it’s been exciting and fulfilling. In a way, I feel like a researcher myself. If you’re one of the many patient heroes participating in clinical trials, Bravo. Thanks for moving the needle for all of us. If you’re thinking about participating, or if you’ve already decided to put on the cape and begin participating, here are some links you might find helpful:

The USA’s National Institutes of Health has a complete list of clinical trials taking place all over the USA, and even some outside of my country. To find them, go to www.clinicaltrials.gov and enter “diabetes” into the search box.

In the United Kingdom, the UK Clinical Trials Gateway is a great resource for finding out about trials happening all over Europe. To perform a search and find out more, go to http://www.ukctg.nihr.ac.uk

JDRF has a very helpful web page that lists multiple sources for registering and finding out about clinical trials. Just go to www.jdrf.org/research/clinical-trials/ to find out more.
 
 
If you’ve participated in a clinical trial, or if you are participating in a trial, won’t you leave a comment below?
 
 
 

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Comments

  • Laddie  On June 27, 2014 at 8:27 pm

    I’ve participated in a couple of online studies. I have applied for a couple of studies recently and been turned down. I’m 62 years old and that seems to eliminate me from many studies. I also have some other autoimmune conditions that might eliminate me. But I have none of the traditional complications such as kidney disease or neuropathy and that eliminates me from some studies. I enjoy reading about your participation in clinical trials and keep doing it. Geographically you live in a good area since UVA is heavily involved in diabetes research. I’ve gotten to the point that I rarely apply anymore because I live in the too sick but not sick enough gray area.

    Like

  • Mike  On July 2, 2014 at 1:59 pm

    Hello Stephen. You and I are “blood brothers,” participants in AP clinical trials at UVA. I’ve been in 5 AP studies. Had to skip 2 other great ones due to work conflicts. Human clinical trials are crucial. We need more people to sign up and take the plunge. My blog werthecure.com was started for the same reason — to highlight clinical trials and encourage more humans to participate. Looking forward to home trials in 2014 and 2015. Thanks for sharing your experiences, too! Mike

    Like

    • StephenS  On July 2, 2014 at 6:21 pm

      Thank you Mike, for your support, for writing about it, and for your participation!

      Like

  • Debra H  On July 21, 2014 at 11:51 am

    In the event that your readers want more general information about participating in clinical trials, I would like to offer suggestions for complete and balanced information including searches, process, protection, benefits and risks. Here are some helpful resources (websites and book):

    1) http://www.CISCRP.org (Center for Information and Study on Clinical Research Participation)
    This non-profit organization is focused on educating and informing the public about clinical research participation. CISCRP also provides valuable information including how volunteers can protect themselves.

    CISCRP can help patients locate ongoing clinical trials by conducting a custom search for them with SearchClinicalTrials.org.

    2) The book: The Gift of Participation: A Guide to Making Informed Decisions About Volunteering for a Clinical Trial (author: Kenneth Getz) – available on the CISCRP website.

    3) And for specific trial listings and news about Clinical Trials, your readers should go to the website: http://www.CenterWatch.com There, they can search for clinical trials in their area or around the world, and they will find listings of clinical trials organized by medical condition, therapeutic area and location.

    My goal is to help people feel empowered and protected as they participate in the Clinical Trials process. I hope you find these suggestions helpful.

    Like

  • reinarocks  On June 18, 2015 at 5:25 pm

    I have participated in a clinical trial at The National Cancer Center. And yes, I would definitely participate again. If no one participates there are no new and innovative treatments for all the patients who will follow us in the future. No matter what the illness is, clinical trials move medicine forward.

    Like

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