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!
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.
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.
Improve interdisciplinary work between GI and GYN to better serve female IBD patient base. Improve education of women IBD patients about their specific risks, ie of chronic pain after fistulectomy.
Women's sexual health remains an underfunded research area, and female IBD patients are at higher risk to suffer from chronic sexual pain.
What is the effect of endurance training and or general exercise on our disease activity/ disease path?
Finding ways to manage stress is arguably a generally good health process, so wouldnt that mean doing so for chronic disease is important? but is more, more or does it potentially harm when exceeding a certain level?
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.
Anyone with a disease can tell you that high stress environments make symptoms worse and relaxation techniques often help. It has also been shown, primarily in animal studies, that "stress hormones" like cortisol or changes at in epigenes have severe repercussions across the body. Can managing these help control symptoms or remission?
The common statement is that 1/3 of Crohn's patients feel better or go into remission during pregnancy. Why? Is there a way to be able to replicate the "pregnancy effect" when patients are not pregnant.
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.
Do patients have better control of their disease when they communicate with other patients (via support groups, camps, online forums, etc)?
Support groups can be a great opportunity to learn more about the disease from the experience of others. They can be a resource of both good and poor advice. I suspect the overall impact of patient peer support is positive of disease management.
I propose a genetics-based investigation that explores why some drugs work for some people but not others.
Many IBD patients go through years of pain and suffering because they haven't found "their drug" yet. This immense suffering could be reduced if we could determine which individuals respond to which drugs and WHY, as determined by their environment and DNA.
Diet Low in Red and Processed Meat Does Not Reduce Rate of Crohn’s Disease Flares
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases