Accelerating IBD Research Through Clinical Trial Participation
A Closer Look at the Crohn’s & Colitis Foundation’s Newest Initiative:
The Clinical Trial Community
Clinical trial recruitment is often one of the most challenging steps in the approval process for new treatments. For inflammatory bowel disease (IBD) patients suffering from Crohn’s disease or ulcerative colitis, new treatment options are often the “game changer” they have been waiting for. Because there is no cure for Crohn’s disease and ulcerative colitis, patients and their doctors are often forced to try a number of different therapies before finding one that provides both symptom relief and healing. But identifying a treatment option that does work is sadly not always enough, as some IBD patients may build up an immunity to a particular medication or lose responsiveness to a drug over time. As patients and their providers are forced back to the drawing board to identify yet another viable treatment option, you can imagine the frustration and discomfort the patient may be feeling. In light of this information, two questions arose within our organization:
• Why don’t more IBD patients feel the urgency to enroll in clinical trials to help generate more treatment options?
• How can we, as an advocacy organization, be impactful in addressing the issue of clinical trial enrollment and participation?
Both of these questions led to the creation of the Crohn’s & Colitis Foundation’s newest initiative, the Clinical Trial Community. This initiative is designed to raise awareness of clinical trials, educate patients about participation, and improve patient and provider communication around engaging in those trials. During the first few months of developing the program, we focused on gathering feedback from IBD patients across the country in order to assess their current awareness of clinical trials and better understand what their attitudes and beliefs were regarding trial participation. In these focus groups we learned that many of our patients were often completely unaware of clinical trials, but once explained, were willing to participate and realized the value it brought to the IBD research community. Of the patients who were already aware of clinical trials, a large majority of those patients viewed it as a last resort and something they were only willing to try if they exhausted all other options. These findings have allowed us to tailor our Clinical Trial Community resources so that we actively address these knowledge gaps among patients and effectively communicate the value of clinical trial participation as a viable and potentially life changing treatment option.
One of the ways we are working to address the knowledge gaps discovered in our focus group and needs assessment is through the development of a clinical trial video series which features patient, research coordinator, and investigator testimonials all aimed at educating patients about the decision making, enrollment, and participation process. Through this series, we hope to convey the benefits that both the individual patient and research community receive through trial participation. The clinical trial video series will also feature a white board animation video on the types of clinical trials available and an explanation of the the phases of clinical trials. It is our hope that this series, coupled with the development of other educational resources and research efforts within our organization, will provide our patients with an interactive way to educate themselves about clinical trials and better understand what clinical trial participation looks like.
Our Clinical Trial Community is set to launch in Summer 2017 and will feature an IBD-specific clinical trial finder, a patient stories page, and a comprehensive FAQ. As the program launches, we will continue to build upon these efforts through the development of additional short videos and creation of targeted pediatric patient and professional educational resources. All of these efforts will be highlighted through our national patient education webinars and other online communications.
The Clinical Trial Community is an exciting new initiative for our organization and one which we hope will greatly contribute to our mission of curing Crohn’s disease and ulcerative colitis and improving the quality of life of children and adults affected by these diseases. We believe that these efforts truly demonstrate our commitment to advancing treatment options for patients with Crohn’s disease and ulcerative colitis and are confident that through clinical research, we will one day find cures for IBD.
To learn more about the Crohn’s & Colitis Foundation’s Clinical Trial Community or for more information on opportunities to support this initiative, please contact Courtney Bisbee, MPH at firstname.lastname@example.org.
*As of March 2017, the Crohn’s & Colitis Foundation of America will shorten its name to the Crohn’s & Colitis Foundation. You can check out our new look: www.crohnscolitisfoundation.org
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