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.
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.
What portion of IBD patients also have IBS? How can IBS be accurately diagnosed in patients with IBD? How can patients/clinicians identify symptoms due to IBD versus IBS, and what treatments are best?
Irratable bowel syndrome (IBS) has many of the same symptoms as inflammatory bowel disease (IBD). Many patients with IBD may also experience IBS making it difficult to know how to treat given that the two conditions are managed differently. Clinicians sometimes attribute symptoms of abdominal pain or diarrhea to IBS without further investigation. I would like to see further study into why many patients continue to experience IBD symptoms when clinical signs suggest remission, and how to best manage these symptoms. I would also like to see how frequently IBS is inaccurately diagnosed.
After treatment failure with an anti-TNFa biologic medication (eg. Remicade, Humira), should patients attempt alternative anti-TNFa biologics or with biologic medications with different mechanisms?
Many patients experience diminished efficacy or complete loss of efficacy with anti-TNFa biologics. Which subsequent biologic medication option is most effective and safe?
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.
There is a significant population of patients for whom biologics are no longer a viable or recommended treatment. Our healthcare going forward is complicated by the permanent effects of these medications on the body's systems.
Create a database that tracks the long-term outcomes for patients on biologic medications (Remicade, Humira, Cimzia, Simponi, Tysabri, and Entyvio) to assess their long-term efficacy.
As IBD research and treatments progress, biologics are becoming an ever-more staple part of a patients treatment regimen. However, many patients still fail to respond effectively to these medications while others can maintain long-term remission specifically because of them. I believe it is important for the IBD community to further explore why this variation in response occurs, and tracking those that respond effectively to these biologic drugs can, perhaps, help us to better understand why some respond while others do not.
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 think if I had better knowledge of a diet, I could reduce flare-ups.
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