Research Ideas  

Welcome to IBD Partners Research Ideas Page!

In this area you will be able to:

  • Propose, vote on, and discuss research ideas
  • View current studies
  • View published research

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You are an active participant in  IBD Partners research prioritization process! Have you ever had a question about IBD that you wish science could answer? Tell us what research is important to you!

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!

Proposed Idea              

What are the long term health effects of surviving childhood ulcerative colitis?

I believe there must be something - ala 'post polio syndrome'. There are no explanations (or treatment, except for partial symptom relief) for what is happening to me. I believe there must be some connection, likely through auto-immune issues, perhaps related to the bowel surgery I had - which supposedly 'cured' me. I cannot be the only survivor experiencing these things.

last activity over 3 years ago
5    1
Proposed Idea              

What kind of medications/andor/diet can be beneficial for older Crohn's folks who have had multiple resections over the years and have a shorter bowel left?

Most all research seems to be preventive, and that is good for those who only have a few feet of good bowel left, but there is still nothing specific for management of Crohns short bowel people. There are alot of us who have been hanging around now 40+ years with 8 to 10 resections because surgery was the primary treatment (or steroids) in the 70's and 80's.

last activity about 2 years ago
1    0
Proposed Idea              

What is the connection between IBD and Hidradenitis Suppurativa?

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.)

last activity about 2 years ago
0    0
Proposed Idea              

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.

last activity about 2 years ago
0    0

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