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!
I have been alternating visits with my GI doc and gynecologist for over a year. We are still having trouble pin pointing if IBD, IBS, or hormones are causing my symptoms. My feeling is that it is all three, and they are causually linked.
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.
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.
Can a history of taking a lot of antibiotics result in wiping out your good gut bacteria and lead to IBD? Can probiitics or stool transplants protect from getting IBD or treat IBD?
Over prescribing of antibiotics starting in childhood has been a documented problem. If this could be contributing to the incidence of IBD, that would be important to know as a further deterrent. Also knowing what to do for patients who have no choice but to take a lot of antibiotics would be helpful. And if this is a subtype of causality, it could be specifically targeted for prevention and treatment.
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?
I tried this as a last resort 3years ago during a very serious flare up of UC and it not only put me in remission but I have not felt this healthy in over 9 years!! Have been thru many stressful situations since being in remission and absolutely no symptoms of a flare up!!!!
I would love to see a study that compared quality of life and remission rates of the SCD diet, Paleo Diet and/or Autoimmune Paleo diet on Crohns and UC sufferers.
Patient testimonials have caused these diets to be incredibly popular with managing IBD symptoms. However the main argument continuously held agains them is the lack of research evidence showing their effectiveness. This sounds like the perfect role of the CCFA, which is charged with conducting research to help those in the I D community. There are now several companies offering frozen Paleo and AIP meal deliveries to individuals for about $300 per week, making a study where participants are sent all 21 meals in a week (to cut down on variation between adherence) cost effective and feasible.
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.
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.
What is the relationship of early life conditions (smoking parents, even during pregnancy, ameba infections, long term constipation, appetite problems) with development of IBD?
I think environmental conditions may be a factor in developing IBD.
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network