Do you have Crohn’s Disease, ulcerative colitis or indeterminate colitis? Would you like to see a cure for Inflammatory Bowel Disease? How would you like to help in finding a cure? I know of a way!
In June of 2015, the Crohn’s and Colitis Foundation of America (CCFA) launched a research database just for IBD. The new initiative (known as IBD Plexus) involves patients, physicians, academic and industry researchers. This cooperation is powered by each of these stakeholders and their passion for finding better treatments and cures.
“There is a strong and growing demand from both the medical and patient communities for new therapies that will keep IBD in remission,” says James Lewis, MD, MSCE. Lewis is a Professor at the University of Pennsylvania and helped develop IBD Plexus based on a research exchange model. “We have seen breakthrough discoveries in IBD,” Lewis explains. But he says that the “progress toward identifying effective, personalized treatments and potential cures has been slow.”
So how does this IBD Plexus thing work? To simplify, through use of novel technology, IBD Plexus centralizes and links a lot of data from mulitple IBD studies and provides the opportunity for researchers, physicians and patients to access and share data to accelerate research.
How can you get involved? Basically, IBD Plexus gathers data based on surveys filled out by real patients just like you though CCFA Partners. Approximately 14,000 patients have enrolled in the online registry to help physicians and researchers better understand the issues facing IBD patients.
Twice a year, you can fill out a short survey to determine things such as how you eat, what your treatments are, where you live and how you are functioning in your day-to-day life. This gives you as a patient an active role in the research process while giving you access to tracking tools that help give you more control in managing your health. It’s really that easy! Everyone, including j-pouchers and estimates with IBD can participate. And with your help, I know we can find a cure.
For more information on CCFA Partners, click here.
To join CCFA Partners and help with groundbreaking research, click here.
To learn more about IBD Plexus, click here.
