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've noticed on Twitter that there is a need of psychologists that understand how IBD can effect one's mental state of being.
Anyone with a disease can tell you that high stress environments make symptoms worse and relaxation techniques often help. It has also been shown, primarily in animal studies, that "stress hormones" like cortisol or changes at in epigenes have severe repercussions across the body. Can managing these help control symptoms or remission?
Do those who have had surgery find their quality of life better with the ostomy or by stooling through the pouch?
I have a recent diagnosis of Ulcerative Colitis and think that I will need to have surgery in the near future.
Do patients have better control of their disease when they communicate with other patients (via support groups, camps, online forums, etc)?
Support groups can be a great opportunity to learn more about the disease from the experience of others. They can be a resource of both good and poor advice. I suspect the overall impact of patient peer support is positive of disease management.
What is the effect of endurance training and or general exercise on our disease activity/ disease path?
Finding ways to manage stress is arguably a generally good health process, so wouldnt that mean doing so for chronic disease is important? but is more, more or does it potentially harm when exceeding a certain level?
Mouth problems have been associated with IBD, however, these problems have historically been explained as a symptom of IBD. I would like the hypothesis tested that mouth problems (e.g. possibly due to an altered oral microbiome) may be a trigger of inflammation, and not a symptom (i.e. good oral hygiene is associated with less gut inflammation). Background information: It has been shown that the oral microbiome in IBD patients differs compared to healthy controls (https://www.ncbi.nlm.nih.gov/pubmed/21987382). Anecdotal evidence: I notice a worsening of symptoms when I do not regularly floss. I'm an epidemiologist, so I know there is little value in anecdotal evidence, but still wanted to share my thinking!
What are some modifiable lifestyle habits that have the most significant effects on IBD disease activity?
It would be great if we could identify key modifiable habits that effect disease activity (positive and negative) in order to understand ways to minimize disease activity? Some measures I would propose studying include: amount of sleep, alcohol use, smoking, hours worked per day or days per year, exercise, weight management, frequency of social/family interaction.
Has your inflammatory bowel disease diagnosis (and/or associated symptoms) influenced your preferred location of employment (home-based vs outside the home)?
I think it is important to consider how lifestyle changes influence the progression of IBD. Some diagnosed individuals may seek out jobs that allow them to work from home when symptomatic. This change in lifestyle itself may impact the progression of IBD in ways we don't yet understand. This question is increasingly important as the number of home-based employment opportunities is on the rise. Many jobs can be performed on a computer, and your employer saves money if they don't have to rent and heat an office for your to sit in. Thus, it is expected the trend of increasing home-based employment will continue.
How many IBD patients have ever been referred for counseling or offered an antidepressant by their gastroenterologist?
Depression and anxiety levels are very high in this population. Extending care to the whole person would make sense in managing disease and quality of life.
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