“There are a lot of myths and misconceptions around clinical trials that need to be addressed before the field of IBD can move forward,” points out Dr. Peter Higgins. Both Director of the University of Michigan’s IBD Program and Chair of two divisions of the CCFA (Crohn’s and Colitis Foundation of America), Higgins describes the current clinical trial scenario. He pulls up a surprising statistic: “100% of IBD patients and their physicians want new, more effective therapies for IBD, but less than 1% of patients participate in clinical trials”. While participation in a clinical trial is a personal decision that depends on your individual circumstances, there are several compelling reasons why a clinical trial may be your best route:
1. You benefit from access to new treatments before they become widely available
You may get promising new treatment methods that you can’t get outside clinical research. The new method may have less side effects than the usual care. Access to new options after running out of FDA-approved treatments due to worsening disease
2. You’re empowered to play a more active role in your treatment
Your might feel like a stranger in your own body on the bad days. However, when you participate in a trial, you take charge of your health. You demonstrate that you can indeed improve your situation and actively find a solution that works for you.
3. It’s hard to argue with the cost
Often, the treatment delivered in a clinical trial comes to you free of cost, or at a substantially discounted rate.
4. You receive treatment from experts in the field
This is a great way to gain access to expert care. You’re likely to undergo detailed health monitoring, resulting in a much more thorough analysis of your condition and symptoms than you would otherwise experience. You’ll come into contact with professionals who specialize in your condition. You’ll also probably gain access to more educational resources, patient support programs, and new mentors within your community.
5. Your odds are better
There is some research indicating that people who participate in clinical trials show better health than people at the same stage of the disease who are not involved in clinical trials. Studies are generally disease-specific and do not make sweeping claims of the so-called positive “trial effect” experienced by those participating in a clinical trial. Amazingly, in some cases the healthy benefits remain even when the treatment itself is found ineffective. Whether the “trial effect” is simply a manifestation of the placebo effect or the result of receiving high quality general care during the trial, your health may improve simply through the act of showing up.
6. You improve the lives of others
The treatment that you receive in a clinical trial today could be the life-changing treatment for another patient a year from now. It’s uplifting to think that you play a part in making a new, improved option available for future generations.
7. You’re more likely to find a treatment with less side effects
The medical field advances incrementally every year. In today’s competitive and profitable pharmaceutical market, a more effective solution with fewer negative side effects is constantly in the works—and in a clinical trial, you’re the first to benefit from it.
8. You’re part of something important—and absolutely essential
CCFA President Michael Osso explains, “In order to bring new therapies to market, treatments will have to be evaluated in clinical trials.” He goes on to explain the critical nature of clinical trials and the important role that the CCFA plays in encouraging patients to participate.
Aside from the individual health benefits they deliver, the fact remains that clinical trials are an absolutely essential step in bringing a new treatment to market. Therefore, you might be surprised to learn that only 6% of trials are actually completed on time, according to a 2016 article from the CCFA. This is thought to be due to low enrolment, among other factors. As part of the Crohn’s community, you contribute to a critical, international endeavour when you participate in a clinical trial.
9. It’s never been easier to find one
In fact, Discover Therapies is dedicated entirely to connecting Crohn’s and Colitis patients with clinical trials. Read more about how we are making it simpler for patients and researchers to find new treatments faster on our website, or take advantage of our platform to search for new clinical trials near you.
Prema Menezes, William C. Miller, David A. Wohl, Adaora A. Adimora, Peter A. Leone, William C. Miller, Joseph J. Eron. Does HAART Efficacy Translate to Effectiveness? Evidence for a Trial Effect. PLoS ONE, 2011; 6 (7): e21824 DOI: 10.1371/journal.pone.0021824