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!
What is the comparative safety and efficacy of natural supplements (vitamin D, fish oil, turmeric) commonly used in IBD versus prescription medications?
Many of us try natural supplements instead of or in addition to prescription medications in the management of IBD. Are natural supplement products more safe or effective when compared to prescription medications? Is combining natural supplements with prescription treatments more effective?
What percentage of people who have UC/Crohn's have also been diagnosed with Fibromyalgia? In addition, how long after having UC/Crohn's did Fibromyalgia symptoms begin?
There are many overlapping symptoms between UC/Crohn's and Fibromyalgia. For myself I developed Fibromyalgia after a severe UC flare. I believe chronic pain and fatigue go hand and hand with UC/Crohn's.
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.
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?
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.
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.
Gives insight into options other than medication when nothing else has worked.
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.
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