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!
A test is needed that can tell what kind of IBD a person has. Many medications are geared for UC or CD but not for both and many people who have a diagnosis of UC latter find out they have CD.
There is currently a test for this, however it isn't very accurate. The test needs to be refined so it is accurate. Knowing what type of IBD one has can change the type of treatment one would recieve.
How impactful is the financial burden of medication cost on medication adherence? What are the long term repercussions for patients who opt out of medication therapies?
The patient cost of commonly prescribed medications for the treatment of IBD often falls into Tier VI drug categories with higher out of pocket costs than standard co-pays. This expense may influence patients to opt out of proven therapies due to the nature of the expense leaving them vulnerable to increased flare rates and more frequent hospitalizations that ultimately cost more. Improving medication adherence on the front end could lead to an overall cost savings for patients and insurers alike.
What treatments used for Crohn's Disease are more effective for symptoms that are primarily non-intestinal such as inflammatory arthritis, eye symptoms & skin rashes.
Current treatments seem to address intestinal symptoms and non-intestinal symptoms require additional symptomatic treatments. Too much & too imprecise.
A study by David Underhill in "Cell Host & Microbe" suggests a link between Malassezia in the gut and Crohn's Disease. Crohn's patients had high concentrations of Malassezia on their intestinal walls compared to almost none in healthy patients. Adding this fungus to the gut in mice exacerbated inflammation seen in Crohn's.
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
Steroids are the ONLY medication that has ever worked for my UC. I have tried 9 other medications and none of them get my disease in remission. I also get every awful side effect that steroids cause, so I can't stay on them for very long. I know a lot of other people in this same situation. A version of the steroid that was just as effective at putting the disease in remission and also didn't have the side effects would be worth researching.
Not so much a new research idea, but something to include in existing research efforts: that is: cost. What does the cost of the treatment or medication mean? Does the benefit justify the cost?
Especially for those on fixed incomes, or low incomes, this information may be vital. An older or generic medication may have to be used.
Is it possible to be weaned off of IBD meds (remicade) altogether, e.g., go from 10 units to zero over a period of time.
Like to get away from 3-hr infusions every eight weeks.
What are the treatment outcomes of using Accutane for treatment of resistant acne in adults with Crohn's Disease? Does the dosage and length of treatment time using Accutane impact Crohn's related symptoms?
There is conflicting evidence with small sample sizes and limited studies on the association between Accutane and Crohn's disease. Dermatologists and patients need to know best practice procedures and potential implications, and outcomes before using acne medications.
Diet Low in Red and Processed Meat Does Not Reduce Rate of Crohn’s Disease Flares
Paternal Disease Activity Is Associated With Difficulty in Conception Among Men With Inflammatory Bowel Diseases