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 want to know what the "regular" screening process is for others.
The physical "stress" of getting too little sleep (less than 6 or 7 hours per night) exacerbates my symptoms. This is a phenomenon I have observed over the last 30+ years. Unfortunately, I also have 3 sleep disorders. Therefore, despite the medications I take, I can't tell whether I've had good quality sleep even when I sleep 8 or more hours. Do patients who don't respond well to Crohn's treatments have undiagnosed sleep disorders?
There are four cousins on the paternal side of my family with IBD but no immediate family members. Would like more research on the family genes.
Thinking about future generations.
So many patients with IBD avoid high fiber foods for fear of exacerbating their symptoms. A previous CCFA Partners study "Avoidance of Fiber is Associated with Greater Risk of Crohn's Disease Flare in a 6 Month Period" addressed this, but unfortunately did not differentiate between soluble and insoluble fiber. There is not enough research on IBD and diet in general, but I believe it is so important, because we all have to eat. A high fiber diet is considered to be important for many aspects of good health in the general public. But insoluble fiber specifically is a part of the diet that is widely considered by IBD patients to be taboo. This thought is based on our own personal conclusions rather than on good, solid research. I want to know if and when it's safe to eat fruits and vegetables, and how to prepare them.
Several studies have already been done in Israel at the Meir Institute with very promising results. A placebo controlled study with medication-resistant patients showed a remission rate approximately the same as leading medications. (~50% clinical remission.) Creating safer medications that are also less expensive than current medications should be a high priority, particularly given the promising results, both clinical and anecdotal, and the rising approval of medical cannabis across the US.
Is there a correlation between the use of NSAIDS (Ibuprofen) or other medications known to cause a "leaky gut" and the onset/development of IBD?
I took a large amount of Ibuprofen throughout my teen years for migraines. I have been told that taking Ibuprofen now can cause me to come out of remission due to causing a leaky gut and so I am curious to see if these types of medications can cause or trigger the onset of IBD in adolescents or in patient who chronically take these forms of medications.
I am able to eat home made salad and salad dressing, but almost always get sick on a salad I eat out. Homemade bread, or bread from the chain of Great Harvest bakeries, causes me no problems, but packaged bread does. Rich homemade ice cream causes me no problems, but many packaged ice creams do. Making EVERYTHING from scratch, takes an enormous amount of time. Finding products without any emulsifiers or additives isn't easy; even simple ingredient lists of 5-7 items often contain at least 1. An understanding of even a few things known to be safer or less safe, would expand the repertoire of food I could eat. It's hard to personally test this with a food journal, because many products contain multiple additives. I know from facebook crohns forums, that I am not alone in these issues.
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases
A Novel Patient-Reported Outcome-Based Evaluation (PROBE) of Quality of Life in Patients With Inflammatory Bowel Disease