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 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.
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.
Can improving the diversity in the gut microbiome in UC patients by diet have an impact on reducing inflammation, improving symptoms, and mental health
Because we know that the microbiome of UC patients is different than healthy controls and in dysbiosis. Technologies are now available at much lower costs than years ago.
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 know two other women as well as myself who all agree that had their UC which changed into much worse fully involved crohns after menopause. GIRD, illeum strictures, rectal fishers, stomach and esophagus ulceration, mouth sores...
Female menstrual cycle and the worsening of symptoms with each cycle. Is this hormone related and would contraception ease symptoms?
My monthly cycle can often catapult me back into a full on flare and at the least i see a deterioration in my symptoms at this time of my cycle
I have been alternating visits with my GI doc and gynecologist for over a year. We are still having trouble pin pointing if IBD, IBS, or hormones are causing my symptoms. My feeling is that it is all three, and they are causually linked.
As this is a drug being regularly used and although not relatively new, the known long term side effects are not widely known
Improve interdisciplinary work between GI and GYN to better serve female IBD patient base. Improve education of women IBD patients about their specific risks, ie of chronic pain after fistulectomy.
Women's sexual health remains an underfunded research area, and female IBD patients are at higher risk to suffer from chronic sexual pain.
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