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 is the long term effectiveness of bowel resection as a treatment? What % of people are in remission at intervals of decades following surgery? What factors lead to longer periods of remission?
I have the experience of a surgery in about 1972 and continue to be in remission. Knowing more about why some surgery is sucessful like this seems like it would help inform treatment choices.
What is the comparative safety and efficacy of natural supplements (vitamin D, fish oil, turmeric) commonly used in IBD versus prescription medications?
Many of us try natural supplements instead of or in addition to prescription medications in the management of IBD. Are natural supplement products more safe or effective when compared to prescription medications? Is combining natural supplements with prescription treatments more effective?
Can improving the diversity in the gut microbiome in UC patients by diet have an impact on reducing inflammation, improving symptoms, and mental health
Because we know that the microbiome of UC patients is different than healthy controls and in dysbiosis. Technologies are now available at much lower costs than years ago.
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.
“Milk fats increase the amount of taurine conjugated bile acids that promote growth and metabolic activ ity of sulphate reducing, bile acid tolerant bacterial species, which in turn stimulate pathogenic immune responses in genetically susceptible hosts” Sartor, R. B. Nat. Rev. Gastroenterol. Hepatol. 9, (2012)
When I was diagnosed with Crohn's, my GI told me that diets don't work. After my GI recommended Humira, I decided to try SCD before I tried such a potent medication. The diet started working within days and, by the end of the first month, most of my symptoms were gone. Today it's been over a year and a half since I've had any significant symptoms. I would like to know if SCD works for others and, if so, what percentage of patients.
Is the gut flora of people with IBD similar to people with depression and/or anxiety? I propose exploring a connection between the microbiota associated with IBD and mental health disorders.
I believe this question to be important because disruption of the gut flora is implicated in autoimmune diseases, obesity and mental illness and finding connections could broaden the medical community's approach in treating all of the above. I also think the designation of these illnesses as primarily "western illnesses" is interesting, particularly given how our food system functions (antibiotic use in meat production, use of bleach on salad greens, etc).
Recent data (Kigerl et al. 2016 (JEM), Bourassa et al. (Neuroscience Letters) and others) have suggested that dysbiosis in the gut, similar to that observed in IBD can affect both recovery following neurological injury and general neurological health. Examining reported levels of comorbidity could provide insights into whether further study of these relationships is warranted. This would, hopefully, lead to better outcomes for both neurology and IBD patients.
We need to develop a better understanding of how nutrition as a whole affects IBD and put together a more comprehensive diet plan that includes the definite triggers.
Food has always been a contributing factor in my flares of Crohn's Disease, but the original recommendation by my doctors 20 years ago has turned out to be not only false, but the complete opposite of what I needed to be eating for my illness. I have recently started working on figuring out a better plan for my eating habits and have discovered a few things that I would like validated by research.
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network