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 is the long term effectiveness of bowel resection as a treatment? What % of people are in remission at intervals of decades following surgery? What factors lead to longer periods of remission?
I have the experience of a surgery in about 1972 and continue to be in remission. Knowing more about why some surgery is sucessful like this seems like it would help inform treatment choices.
I would like to know the incidence of relapses of disease (Crohns, UC, other IBD) immediately following a colonoscopy, when the patient has been in remission prior to the test.
I was in remission with my Crohns for years and had an colonoscopy and have had active disease ever since, for over 3 years.
CBDs seen to be a readily available and benign treatment for inflammation of many types. They may prove to be a treatment much easier on the body than the current course of drugs.
Several family members with Chrones and UC also suffered from post nasal drop.
I take it now on the advice of my functional medicine doctor, and think it helps me...
I've noticed on Twitter that there is a need of psychologists that understand how IBD can effect one's mental state of being.
Ever since my diagnosis my feet have felt like ice blocks. It can be very painful sometimes. I am wondering if they are related.
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.
What is the comparative safety and efficacy of natural supplements (vitamin D, fish oil, turmeric) commonly used in IBD versus prescription medications?
Many of us try natural supplements instead of or in addition to prescription medications in the management of IBD. Are natural supplement products more safe or effective when compared to prescription medications? Is combining natural supplements with prescription treatments more effective?
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
Paternal Disease Activity Is Associated With Difficulty in Conception Among Men With Inflammatory Bowel Diseases