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 is the success of remission for people* who have surgery, or resection, versus those who are treated by medications only? (*Note: people who qualify for surgery)
I heard from a parent of a teen with IBD that the doctor wanted to avoid surgery. I have been in remission for years after I had a resection.
As a UC patient, I would do anything to try to prevent my kids from suffering from IBD as I have. I wish I could have known if the very start of their lives might have some impact on their possible IBD futures.
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.
I am able to eat home made salad and salad dressing, but almost always get sick on a salad I eat out. Homemade bread, or bread from the chain of Great Harvest bakeries, causes me no problems, but packaged bread does. Rich homemade ice cream causes me no problems, but many packaged ice creams do. Making EVERYTHING from scratch, takes an enormous amount of time. Finding products without any emulsifiers or additives isn't easy; even simple ingredient lists of 5-7 items often contain at least 1. An understanding of even a few things known to be safer or less safe, would expand the repertoire of food I could eat. It's hard to personally test this with a food journal, because many products contain multiple additives. I know from facebook crohns forums, that I am not alone in these issues.
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.
I propose to look at the incidence of periodontal disease in IBD patients, and to examine if there is any correlation to the disease itself, or to medications used for disease control.
Anecdotally, there seems to be a positive correlation; however, hard data seems non-existent. With the known relationship between periodontal disease and heart disease, it would be important for IBD patients to know if this is an issue they need to stay on top of.
Why is Crohn's disease being diagnosed so much more frequently in the past 2-5 years? Is it better diagnostics and understanding of the disease or that more drugs are being made to treat it?
To the lay person with IBD, especially those of us diagnosed with UC 10, 15, 20 years ago, so many of us are now being told we may have Crohn's and going through more testing to identify is that is so. It is also interesting that the heading "IBD" seems to more often refer only to Crohn's. It's as if those of us with a UC diagnosis are the ugly step-sister swept into a corner. And I have to wonder if there is as much research going on for UC as for Crohn's.
I have been tested negative for celiac and gluten sensitivity, yet avoiding gluten improved my flare-ups, symptoms, and overall quality of life tremendously.
What is the nutritional impact (loss of nutrients) which a person with IBD (Ulcerative Colitis) experiences when their Colitis is in remission.
I have been in remission for 6 years, yet I seem to not be absorbing Potassium, producing Vitamin D - even though I work outdoors year round in a city that claims 360 days of sunshine, and seem to not be absorbing several other minerals. I suffer from chronic continuous calcium oxalate kidney stones due to calcium binding with oxalate instead of magnesium citrate or potassium citrate. The nutritional absorption in the colon would be especially useful for drs to treat patients like me as medication absorption also seems to be an issue.
Could virtual colonoscopy replace conventional colonoscopy as a routine method of assessment for patients in remission?
Virtual colonoscopy is less invasive, reducing the risk of bowel perforation and eliminating the need for anesthesia.
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