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?
How can the sCDAI be accurately assessed for Crohn's patients who experience constipation and not frequent and/or loose bowel movements?
Diarrhoea is not a symptom in all Crohn's patients. This causes two primary issues. The first issue is the length of time to be tested and diagnosed as constipation is not often seen as a symptom. Second, most disease activity surveys/charts/measurements become inaccurate for those who do not experience loose, watery stools. This only adds to the frustration and alienation of the patient from society and now their own IBD community.
How likely is being put on Remicade for Crohn's Disease going to stop the recurrence of fistula's and abscesses to prevent having to have surgeries?
I have had four abscesses removed via surgery thus far and one fistula removed. However, another fistula has been found via a recent ultra sound I had done which I was told most likely will need to be treated with another surgery.
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.
Are there sub-types of UC? IBD has been broken into UC and Crohn's which helped with treatment. What other sub-categories are there? Could explain why certain meds work for some and not others, and shed light on question of genetics?
I have UC and so far no treatment works. My mother had the same problem until she had a colectomy. Perhaps if we understood why our disease is different than some other folks' UC, we could devise a better treatment plan.
Before the COVID crisis, I ate a restaurant meal a half-dozen times a week. During the lockdown restaurant food is rare. My Crohn's symptoms are much improved. Why? What is the relationship?
Eating in restaurants is an important part of life today. We cannot eat at home for every meal (work, school, travel, friends).
Why is Crohn's disease being diagnosed so much more frequently in the past 2-5 years? Is it better diagnostics and understanding of the disease or that more drugs are being made to treat it?
To the lay person with IBD, especially those of us diagnosed with UC 10, 15, 20 years ago, so many of us are now being told we may have Crohn's and going through more testing to identify is that is so. It is also interesting that the heading "IBD" seems to more often refer only to Crohn's. It's as if those of us with a UC diagnosis are the ugly step-sister swept into a corner. And I have to wonder if there is as much research going on for UC as for Crohn's.
Do longitudinal evaluation of Vit D3 findings relate with disease activity, progress, treatment response, or remission?
Crohn's patients appear to have consistently low Vit D3, and disease prevalence is higher in northern latitudes with less sun and lower natural Vit D3 exposure and levels. Ultimately conduct longitudinal study to evaluate benefit aggressive management of Vit D3 to assist as adjunct in therapy, and to consider benefit of supplementation in at possible risk populations (1st degree family at high latitudes).
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Patients with Crohn's Disease in CCFA Partners