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!
What percentage of people who have UC/Crohn's have also been diagnosed with Fibromyalgia? In addition, how long after having UC/Crohn's did Fibromyalgia symptoms begin?
There are many overlapping symptoms between UC/Crohn's and Fibromyalgia. For myself I developed Fibromyalgia after a severe UC flare. I believe chronic pain and fatigue go hand and hand with UC/Crohn's.
The physical "stress" of getting too little sleep (less than 6 or 7 hours per night) exacerbates my symptoms. This is a phenomenon I have observed over the last 30+ years. Unfortunately, I also have 3 sleep disorders. Therefore, despite the medications I take, I can't tell whether I've had good quality sleep even when I sleep 8 or more hours. Do patients who don't respond well to Crohn's treatments have undiagnosed sleep disorders?
Compare medications taken (and other medical conditions experienced) by IBD patients BEFORE symptoms of IBD began to greater understand causes of the disease.
Prevention is the best medicine!
Certain probiotic strains produce histamine, and others help break it down. We should study the efficacy of supplementation with probiotic strains known to break down histamine in controlling the incidence of flares.
So many people are told that probiotics are good for them. I have always been very sensitive to them. I recently discovered that some strains actually produce histamine in the body and - therefore - could have been contributing to my symptoms and flare ups. I would love to know if supplementing with the strains that break down histamine could reverse inflammation in the gut.
How do patients rank their severity of symptoms and quality of life, in comparison to the indices used in IBD studies to evaluate effective outcomes?
Studies commonly utilize scales such as CDAI to evaluate disease severity. For these scales to hold value in determining treatment outcomes, it is essential to evaluate whether the scales align with the perceptions of symptoms reported by patients.