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 factors (medicine, disease trajectory, lifestyle, diet, etc.) are important for getting into long-term remission? A scientific study of people with IBD who have attained long-term remission.
There are many research studies out there that focus on the details of IBD, whether that be particular medicines and their efficacy or the biological processes of autoimmunity in the gut. This research question asks researchers to take a step back and consider the possibility of there being other factors that have not been previously considered. For example, do people with IBD who attain long-term remission have particular variants of IBD? Do they combine certain medicines and lifestyle factors? My IBD was quite severe between 2000 and 2003. I've now been in long-term remission since 2006, with only very mild rises in inflammation as related to lactose intolerance once every few years (as measured by fecal calprotectin tests). My doctors never seemed concerned about those slight rises of inflammation, and my calprotectin levels always returned to normal rather quickly. It could be that I was just lucky in combining a number of lifestyle, diet, medicine, and other factors. I've gotten lots of questions from other patients with IBD. Many want to know what worked. I don't know that what worked for me would work for others. And I think that it would be better to look at these kinds of factors in a group of IBD patients who have attained long-term remission.
What is the role of antibiotics in triggering a flare up or induce/maintain remission (with particular focus on Rifaximin) ?
There have been a few researches showing that antibiotics might have a role in flares/remission. I have been diagnosed with UC 20 years ago and I have noticed that many times when I take antibiotics for other non IBD related issue my UC wakes up. I have also noticed that Rifaximin helps when I am experiencing mild symptoms. Could it be that some antibiotics kill the good bacteria therefore triggering a flare up and other have a positive effect killing the bad bacteria therefore supporting remission?
What approaches to healing did people diagnosed with IBD and experiencing long term "remission" claim were most effective in achieving this outcome?
I think it's important to study people who've for all practical purposes recovered from IBD. I've come across many people like this. I'd like to know more about what they did.
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases
High Patient Activation Is Associated With Remission in Patients With Inflammatory Bowel Disease