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!
I want to know how other people are affected since it has had a big impact in my own life being diagnosed when I was a teenager, and after the surgeries I've had that removed my colon and built a jpouch.
What is the effect of vagus nerve stimulation in ulcerative colitis? What is the effect of an implanted VNS device on UC? What is the effect of a transcutaneous VNS device on UC?
Vagus nerve stimulation has been studied in Crohn's disease with promising results, and needs to be studied in ulcerative colitis, so that all patients with IBD may have access to this new therapy that has shown success even for patients who did not succeed on oral or IV medication. For example: https://www.newsday.com/news/health/crohns-drugs-feinstein-institute-1.20780533
This question is relevant to me because I was conceived through IVF, and my mom wonders if that may have something to do with my diagnosis of Crohn's. Her reasoning is that mothers who choose IVF have to take very high doses of hormones, so she wonders if that may have negative effects on the mother that can affect the baby's health. I think this is an important question because it could affect how mothers choose to have children, especially if IBD runs in their family. It may also be helpful for children conceived through IVF to know their risks, so they can be aware of it and be followed more closely by their PCP, especially if they have GI troubles.
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.
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.
I have been a sufferer of HS for many years, even before I was formally diagnosed with Crohn's. It seems that when I have a flare, the HS flares up also. I was curious if there is a connection, how many people also have HS that have IBD diseases and what treatments have been successful (i.e. biologics, surgery, etc.)
What is the difference between diseased/inflamed tissue in Crohn's or UC and the seemingly healthy tissue WITHIN THE SAME PERSON?
This is important because in many cases of IBD, there is healthy tissue. I had UC covering only half my colon. Why was the other half of it healthy? What was going on within that tissue that left it healthy and intact rather than inflamed? Why does UC spread over time if uncontrolled? Why isn't the whole colon/intestinal tract inflamed all the time?
Rat models of IBD usually can't get into this because of the way they induce colitis is different than how humans get UC. Why does UC generally start in the rectum and move its way upward? What causes it to often start there and then what causes it to spread?