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!
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.
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.
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.
How can we help couples make more informed decisions regarding medication usage during pregnancy and nursing? Most biologics have not even had animal studies conducted.
Making healthy decisions about the health of one's unborn child is one of the most important responsibilities of a parent. Any help the medical community can give would help with better outcomes for babies and mothers in addition to easing pre-pregnancy anxieties.
Is the gut flora of people with IBD similar to people with depression and/or anxiety? I propose exploring a connection between the microbiota associated with IBD and mental health disorders.
I believe this question to be important because disruption of the gut flora is implicated in autoimmune diseases, obesity and mental illness and finding connections could broaden the medical community's approach in treating all of the above. I also think the designation of these illnesses as primarily "western illnesses" is interesting, particularly given how our food system functions (antibiotic use in meat production, use of bleach on salad greens, etc).
How can the sCDAI be accurately assessed for Crohn's patients who experience constipation and not frequent and/or loose bowel movements?
Diarrhoea is not a symptom in all Crohn's patients. This causes two primary issues. The first issue is the length of time to be tested and diagnosed as constipation is not often seen as a symptom. Second, most disease activity surveys/charts/measurements become inaccurate for those who do not experience loose, watery stools. This only adds to the frustration and alienation of the patient from society and now their own IBD community.
I have had amazing success in treating my UC with an herbal formula (called Isatis Cooling) for about 15 years and wish that other people knew of this option. I understand that many other people have had similar success, however the medical community generally does not make patients aware of such options (even as a last resort prior to surgery or medications with known severe adverse side effects). It seems that their reasoning is that they are not aware of these options, or if they have heard of them (and their anecdotal effectiveness) they still do not even mention them to others because there is no "scientific evidence" to support their effectiveness or safety. I feel this is a disservice to patients. Doctors should be aware of the range of available options and help to spread this information (even with caveats about the lack of study), as mine thankfully did. In the best case, studies should be done on the effectiveness and safety of herbal remedies.
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
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners