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!
Create a database that tracks the long-term outcomes for patients on biologic medications (Remicade, Humira, Cimzia, Simponi, Tysabri, and Entyvio) to assess their long-term efficacy.
As IBD research and treatments progress, biologics are becoming an ever-more staple part of a patients treatment regimen. However, many patients still fail to respond effectively to these medications while others can maintain long-term remission specifically because of them. I believe it is important for the IBD community to further explore why this variation in response occurs, and tracking those that respond effectively to these biologic drugs can, perhaps, help us to better understand why some respond while others do not.
We should compare individuals who manage their disease with medication and those who manage their disease with popular diets in the IBD community, such as SCD, FODMAPS, paleo, etc.
One of the great questions in the IBD community is, understandably, about food. Some people are able to manage their disease with with diet alone, but many take medication. So, what's the difference? Why do particular meds work for some, and particular diets work for others? I propose comparing individuals who manage their condition with diet vs. those who manage their condition with medication, with the goal of figuring out whether it's genetics, the microbiome, or some other factor that makes a particular strategy effective for an individual. Ideally the "diet" and "med" groups would be as similar as possible (same disease in same location, similar initial clinical courses, same objective markers of inflammation, etc), and we'd want two groups of patients who have disease objectively "under control." This could impact every patient with IBD and better guide treatment decisions.
How safe is it for IBD patients to become pregnant? How do medications affect the child, and what steps should the parents take before deciding to conceive?
There is very little research available to patients on the effects of IBD medication on unborn children. Many patients are left trying to weigh the risks themselves, without a complete understanding of the long-term effects.
The use of Cannabis for CD symptoms should be highly considered. We are constantly using drugs to manage our symptoms but with the use of those drugs can come serious side effects. If you are someone like myself who suffers from extreme nausea waking up in the morning and attempting to keep a pill down is in a word, impossible. You can't keep the medication down long enough for it to take any actual effect but taking a couple deep breaths to calm yourself and take your Cannabis is a much quicker, easier solution that improves nausea instantly. Research has shown the CBD in Cannabis is linked to incredible anti-inflammatory, pain relieving, anti-nausea, anti-anxiety, and muscle relaxing properties. This would be extremely beneficial to us CD suffers since our disease revolves around inflammation. Cannabis when used properly is a easier, safer, more effective way to relieve CD symptoms.
When I was diagnosed with Crohn's, my GI told me that diets don't work. After my GI recommended Humira, I decided to try SCD before I tried such a potent medication. The diet started working within days and, by the end of the first month, most of my symptoms were gone. Today it's been over a year and a half since I've had any significant symptoms. I would like to know if SCD works for others and, if so, what percentage of patients.
Multiple doctors have recommended that I start treatment for my Crohn's disease. There are many options from diet change, steroids, and immonosuapresants. My CD is very active and I have already had two surgeries.
How can we help couples make more informed decisions regarding medication usage during pregnancy and nursing? Most biologics have not even had animal studies conducted.
Making healthy decisions about the health of one's unborn child is one of the most important responsibilities of a parent. Any help the medical community can give would help with better outcomes for babies and mothers in addition to easing pre-pregnancy anxieties.
Gives insight into options other than medication when nothing else has worked.
How many IBD patients take antidepressants to help manage their health? Does this help to fight off remission by controlling depression?
Anything that prevents remission is important!
Diarrhea is a big problem in IBD, and it can be caused by many different factors. I was wondering if we might help each other by discovering what everyone uses and how well it works.
Not every patient is aware of options for controlling this distressing symptom
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