In this area you will be able to:
- Propose, vote on, and discuss research ideas
- View current studies
- View published research
Here, you can submit a research idea to the community, cast your votes, and discuss research ideas proposed by other members. Please make your research question as specific as possible. Other members will vote on your research idea, and we will prioritize research ideas with the most votes.
You are allowed to vote for your own proposed research idea if you want. However, you can only vote for a total of five research ideas. If you have already cast your five votes and an idea you like even more is proposed, you can change your votes at any time to reflect your current preferences.
The research team will review all submitted ideas and provide a response to you and to the community. If your idea leads to an IBD Partners Study, you will have the opportunity to serve as a patient collaborator on the research team for that study.
We encourage you to prioritize the ideas that are most important to you, even if the research team determines that your idea is not a good fit for IBD Partners. We will share ideas labeled “Not a Good Fit” with researchers outside of our network when appropriate. We want to make sure all of your votes count!
Thanks for your participation in this important platform to help the IBD research community understand what research questions are important to patients. We are passionate about finding answers to your questions!
I have read a lot of anecdotal stories and watched many documentaries about how completely removing gluten from the diet has improved, and sometimes reversed, many health ailments such as high blood pressure, high cholesterol, diabetes, fibromyalgia, MS, IBD, and more. I also read the results of the previous CCFA partners survey that indicated improvement of symptoms by patients following a gluten free lifestyle. I would love to see a more in-depth, controlled study of this topic. Most doctors I have visited have never recommended a restrictive diet to improve my symptoms. The only person to do this is my current nutritionist who is able to control her UC by eliminating gluten. Just a few of my resources have been the book Wheat Belly by Dr. William Davis and the documentaries Forks Over Knives and Fed Up.
Do patients have better control of their disease when they communicate with other patients (via support groups, camps, online forums, etc)?
Support groups can be a great opportunity to learn more about the disease from the experience of others. They can be a resource of both good and poor advice. I suspect the overall impact of patient peer support is positive of disease management.
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD
An Update on the CCFA Partners Internet Cohort Study