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 diet (i.e. plant based, whole food/vegan) is most likely to help IBD patients achieve and retain remission?
Many medications and treatments for IBD are costly and long-term commitments. Dietary and lifestyle changes are a crucial first line of defense and often a more financially sustainable intervention. Patients and medical practitioners need more information about health-supportive diets.
I think if I had better knowledge of a diet, I could reduce flare-ups.
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.
I have read a lot of anecdotal stories and watched many documentaries about how completely removing gluten from the diet has improved, and sometimes reversed, many health ailments such as high blood pressure, high cholesterol, diabetes, fibromyalgia, MS, IBD, and more. I also read the results of the previous CCFA partners survey that indicated improvement of symptoms by patients following a gluten free lifestyle. I would love to see a more in-depth, controlled study of this topic. Most doctors I have visited have never recommended a restrictive diet to improve my symptoms. The only person to do this is my current nutritionist who is able to control her UC by eliminating gluten. Just a few of my resources have been the book Wheat Belly by Dr. William Davis and the documentaries Forks Over Knives and Fed Up.
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.
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.
We need to develop a better understanding of how nutrition as a whole affects IBD and put together a more comprehensive diet plan that includes the definite triggers.
Food has always been a contributing factor in my flares of Crohn's Disease, but the original recommendation by my doctors 20 years ago has turned out to be not only false, but the complete opposite of what I needed to be eating for my illness. I have recently started working on figuring out a better plan for my eating habits and have discovered a few things that I would like validated by research.
Researching IBD symptom of fatigue and low energy: normal diet arm vs. supplement arm (Vitamins D3 and B12, and Fish Oil.)
There are many health benefits of being on a plant based diet. However, veganism can be associated with low levels of vitamins D3 and B12. Such as study would determine comprehensive care for patients considering their energy levels, diet, and supplement intake.
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.