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!
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.
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?
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.
It took 16 years to verify my Cohn's, from age 13-29 years. Had all sorts of tests and was treated like I was crazy. Spent a month in treatment due to anorexia because eating was so painful. Diagnosed by having exploratory surgery. Because of that I had malnutrition, lost all my teeth and suffered way too long.
I have begun to notice a recent correlation of my personal symptoms with seasonal allergies, and I am wondering if others have experienced this as well, or if antihistamines play any roll in this correlation.
Sequence the DNA of components of patients' microbiomes to find any associations with variables like severity of symptoms, location of disease, extra-intestinal manifestations and response to medications.
The 'genome' of a patient's microbiome could provide guidance in treating with specific medications and/or probiotics.
Food is a major creator to our symptoms and without proper knowledge of what is upsetting our immune systems and causing our inflammation we will continue to suffer. I've currently been researching food intolerance tests and found as all things there are good and bad opinions towards the different food intolerance methods but in my reading I discovered many believe the tests are not entirely conclusive. If we created a test to easily determine the foods that cause us any irritation we would have a much better chance of going into remission by avoiding the foods that create inflammation.
Research shows less colitis in mice eating high cellulose than mice eating low cellulose & Crohn’s symptoms stopped in 4 wks in 4 people eating a high cellulose (bran) cereal. Cellulose feeds good bacteria—does eating bran cereal help fix the microbiome?
Many people with Crohn's disease want to know what food to eat. There seems to be a lot of research about drugs and dietary supplements, but not much research to help people know what food to eat.
Has your inflammatory bowel disease diagnosis (and/or associated symptoms) influenced your preferred location of employment (home-based vs outside the home)?
I think it is important to consider how lifestyle changes influence the progression of IBD. Some diagnosed individuals may seek out jobs that allow them to work from home when symptomatic. This change in lifestyle itself may impact the progression of IBD in ways we don't yet understand. This question is increasingly important as the number of home-based employment opportunities is on the rise. Many jobs can be performed on a computer, and your employer saves money if they don't have to rent and heat an office for your to sit in. Thus, it is expected the trend of increasing home-based employment will continue.
I have been tested negative for celiac and gluten sensitivity, yet avoiding gluten improved my flare-ups, symptoms, and overall quality of life tremendously.
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
Symptom Clusters in Adults with Inflammatory Bowel Disease