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!
We should compare individuals who manage their disease with medication and those who manage their disease with popular diets in the IBD community, such as SCD, FODMAPS, paleo, etc.
One of the great questions in the IBD community is, understandably, about food. Some people are able to manage their disease with with diet alone, but many take medication. So, what's the difference? Why do particular meds work for some, and particular diets work for others? I propose comparing individuals who manage their condition with diet vs. those who manage their condition with medication, with the goal of figuring out whether it's genetics, the microbiome, or some other factor that makes a particular strategy effective for an individual. Ideally the "diet" and "med" groups would be as similar as possible (same disease in same location, similar initial clinical courses, same objective markers of inflammation, etc), and we'd want two groups of patients who have disease objectively "under control." This could impact every patient with IBD and better guide treatment decisions.
The numbers of IBD patients using medicinal marijuana is increasing at a rapid pace and many patients who use it feel that it improves their quality of life. We need research-based evidence to determine the underlying connection. Does it improve symptoms that make patients feel better (pain, loss of appetite, decreased stress and increased sleep), or does it actually have an anti-inflammatory effect on the gut?
I tried this as a last resort 3years ago during a very serious flare up of UC and it not only put me in remission but I have not felt this healthy in over 9 years!! Have been thru many stressful situations since being in remission and absolutely no symptoms of a flare up!!!!
“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)
I propose a genetics-based investigation that explores why some drugs work for some people but not others.
Many IBD patients go through years of pain and suffering because they haven't found "their drug" yet. This immense suffering could be reduced if we could determine which individuals respond to which drugs and WHY, as determined by their environment and DNA.
Patients are experimenting with fecal transplants without the benefits of a scientific study determining effectiveness and safety. Can we pump more funds into understanding the role of microbes on IBD, and whether there is a safer way to introduce beneficial microbes into the gut?
The common statement is that 1/3 of Crohn's patients feel better or go into remission during pregnancy. Why? Is there a way to be able to replicate the "pregnancy effect" when patients are not pregnant.
What research has been done on using CBD extracted from marijuana or on marijuana in the treatment of various IBD (Crohn's, Colitis, etc)? Are there positive correlations to it treating the disease?
Gets users talking about potential alternative treatments, as well as treatments that may have far less significant side effects when compared to biologics and steroids.
Anyone with a disease can tell you that high stress environments make symptoms worse and relaxation techniques often help. It has also been shown, primarily in animal studies, that "stress hormones" like cortisol or changes at in epigenes have severe repercussions across the body. Can managing these help control symptoms or remission?
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