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!
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.
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.
Anti-TNF therapy has been proven to treat both Crohn's and uveitis. There is no research yet on whether anti-interleukin therapy is effective for uveitis. My personal experience has shown that anti-interleukin therapy does not work on uveitis. Is my hypothesis correct?
Wondering if many people taking these drugs have this disease
What is the nationwide average cost of Remicade per 5mg/kg? It seems that this number fluctuates immensely from state-to-state. Would be curious what they pay in Canada too.
When I moved from NYC to Vermont, my Remicade quadrupled. I receive 10mg/kg, so 800mg, every 2 months. In NYC this would cost me around $6k each time. In Vermont it's $24k each time. Very concerning.
Biologics can cause cancer, a risk I will never take. I'm allergic to antibiotics and steroids are not good for long time use. I'm on immunosuppressants but there needs to be another option.
I took Pentasa for over 10 years and when my creatinine levels got high I saw a nephrologist who said this damage was caused by drugs like Pentasa. My GI said this is an area of disagreement. I would like this researched so the 5-ASA drugs can be discontinued as a long term IBD treatment.
Obviously medication is prescribed a certain way for a reason. However, I am not alone when it comes to the need to reduce my medicine due to expense. I'm curious if, for example, it is better to take 2 pills of 4 prescribed/day or 4/day every other day. I just want to know the safest bet.
Symptom Clusters in Adults with Inflammatory Bowel Disease
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners