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 moved from New York City to Burlington, VT and my medication went from $6000 every 2 months to $24k. It quadrupled because I crossed state lines. I can't be the only one who is shocked by this and are curious why such a thing could happen.
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.
There don't seem to be enough studies on this. Personally I was very depleted in nutrients from my disease and once I replenished them through vitamins, I feel so much better, more energy particularly.
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.)
Why do UC patients with complete colectomy continue to have autoimmune disease as well as low hemoglobin years after the surgery?
There is very little information on why autoimmune disease remains in the body despite having a complete colectomy for Ulcerative Colitis.
I have UC and waiting to hear if I now have Graves Disease.
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?
Can reducing inflammation and increasing gut health through the removal of parasites improve ulcerative colitis?
I've personally have experienced reduced inflammation from removal of parasites. A great video series that is currently showing for free is https://autoimmunesecrets.com. The end of video 4 mentioned the following herbs for parasite removal: * mimosa pudica * neem * clove * vidanga (an Ayurvedic herb)
In 2014 I went into A-FIB because I was deprived of vitamins and nutrients in my system. Since then I am taking very powerful supplements that work! Does this happen to many Crohns patients?
I was taking many supplements and nutrients at the time. I had no warning signs that this could happen. P.S. the cardiologist said my heart was healthy. It's important for patients to know, that proper nutrition is a must!