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!
The numbers of IBD patients using medicinal marijuana is increasing at a rapid pace and many patients who use it feel that it improves their quality of life. We need research-based evidence to determine the underlying connection. Does it improve symptoms that make patients feel better (pain, loss of appetite, decreased stress and increased sleep), or does it actually have an anti-inflammatory effect on the gut?
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.
For those patients who have failed anti-TNF alpha therapy, what is the next best step? Is Entyvio, Stelara, or Xeljanz more effective?
Many patients, myself included, have either not responded to anti-TNF therapies or have lost response. It would be helpful for both doctors and patients to know what the next best step is.
IBD can have a significant impact on motility and gut absorption. Most medication pharmacokinetic studies are completed using healthy volunteers. If there is a significant impact on oral medication absorption/pharmacokinetics with active IBD, this may have an important role in determining a safe and effective dose.
Are there any IBD patients who are on the Paleo or Specific Carbohydrate Diet? Has this diet positively affected your symptoms?
While all IBD sufferers have unique food triggers, I was wondering if anyone has had success by eliminating certain foods.
I think if I had better knowledge of a diet, I could reduce flare-ups.
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.
How many people who have had a resection suffer with ongoing diarrhea? What medications/OTC drugs are most effective with this problem?
This is important for quality of life... and perhaps surgeons will be more conservative in cutting if there is a chance to save important regions of the intestinal track!
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease
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