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 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.
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 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...
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.
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.
We should compare individuals who manage their disease with medication and those who manage their disease with popular diets in the IBD community, such as SCD, FODMAPS, paleo, etc.
One of the great questions in the IBD community is, understandably, about food. Some people are able to manage their disease with with diet alone, but many take medication. So, what's the difference? Why do particular meds work for some, and particular diets work for others? I propose comparing individuals who manage their condition with diet vs. those who manage their condition with medication, with the goal of figuring out whether it's genetics, the microbiome, or some other factor that makes a particular strategy effective for an individual. Ideally the "diet" and "med" groups would be as similar as possible (same disease in same location, similar initial clinical courses, same objective markers of inflammation, etc), and we'd want two groups of patients who have disease objectively "under control." This could impact every patient with IBD and better guide treatment decisions.
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.
Recent data (Kigerl et al. 2016 (JEM), Bourassa et al. (Neuroscience Letters) and others) have suggested that dysbiosis in the gut, similar to that observed in IBD can affect both recovery following neurological injury and general neurological health. Examining reported levels of comorbidity could provide insights into whether further study of these relationships is warranted. This would, hopefully, lead to better outcomes for both neurology and IBD patients.
How safe is it for IBD patients to become pregnant? How do medications affect the child, and what steps should the parents take before deciding to conceive?
There is very little research available to patients on the effects of IBD medication on unborn children. Many patients are left trying to weigh the risks themselves, without a complete understanding of the long-term effects.
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