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!
The prevelance of careeganan in the diets of those who have developed Colitis / chrones. Secondly how foods with this present effects the prevelance of associated symptoms
The current research around careeganan shows that this is harmful and damages the body in the way colitis and chrons presents itself. If this information is not widely known people continue to expose themselves to harmful foods.
“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)
Do those who have had surgery find their quality of life better with the ostomy or by stooling through the pouch?
I have a recent diagnosis of Ulcerative Colitis and think that I will need to have surgery in the near future.
I kept very detailed notes on food and symptoms when I used diet to end a significant flare (6 mos.). I went into remission within 2 wks. Any researcher interested in notes?
useful addition to current research
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.
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.
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.
In light of recent data from Partners showing a link between depression and a subsequent flare, im curious how many patients seek/receive treatment so as to minimize the risk of a flare. For those that don't, I wonder why and what barriers might impact access to care.
Nicotine has shown to be effective for UC in some individuals, both prior- and non-smokers. What is the mechanism? Does nicotine affect the microbiome, the immune system or both?
Big Pharma will not take on the role of studying nicotine as there is no $$$ in it. Few studies with small sample sizes have been done but more research is needed.
New research ive seen online indicates MAP could play a role in the cause of crohns. New research to detect and kill this bacteria may lead to a cure, better understanding, and better treatment for patients who are suffering from IBD.
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