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!
Since we know the Microbiome is a key component in Crohns disease, What therapies are being developed to treat the Microbiome?
I see drug companies producing drug after drug for inflammatory processes, which I know is needed for Crohns, but I am wondering when and if targeted Microbiome therapies are in the future of western medicine for Crohns?
I would like more research done on using the combination of a biologic (Humira) and Azathioprine (Imuran) together for treatment of crohns. Are the benefits really worth the risk? or is the risk not that bad?
I am on both of these meds and I have been questioned by my pharmacist about taking both of them together. I have read about the risks, and I'm not sure if I really do need both of the drugs. The information I have read seems to imply that getting cancer at some point is almost a certainty.
Food is a major creator to our symptoms and without proper knowledge of what is upsetting our immune systems and causing our inflammation we will continue to suffer. I've currently been researching food intolerance tests and found as all things there are good and bad opinions towards the different food intolerance methods but in my reading I discovered many believe the tests are not entirely conclusive. If we created a test to easily determine the foods that cause us any irritation we would have a much better chance of going into remission by avoiding the foods that create inflammation.
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.
It took 16 years to verify my Cohn's, from age 13-29 years. Had all sorts of tests and was treated like I was crazy. Spent a month in treatment due to anorexia because eating was so painful. Diagnosed by having exploratory surgery. Because of that I had malnutrition, lost all my teeth and suffered way too long.
Can fistulae (particularly perineal/perianal) be caused by holding in BMs for long stretches of time? Specifically, is this occurring in children and teens with IBD?
I had diarrhea from age 11 (1971) without a diagnosis until 1978 when I had a perineal abscess drained by a gynecologist in the hospital. I could see that it was a fistula (dad had medical books around the house). About a week later, while on Cleocin and Keflex, my colon perforated and I almost died before expl lap and temporary colostomy to "rest" my gut. I'd had 7 years of public school, holding in the stool all day, until I could get home. I was not comfortable having diarrhea at school, either because of complaints from kids or smokers who dominated the bathrooms.
Research tends to focus on negative emotional state (depression) and the potential downside. Work by Dr B. Fredrickson shows positive emotions can provide favorable health impact and has developed a simple on line tool to measure positive emotions which could be incorporated into this site to do research going forward.
Sequence the DNA of components of patients' microbiomes to find any associations with variables like severity of symptoms, location of disease, extra-intestinal manifestations and response to medications.
The 'genome' of a patient's microbiome could provide guidance in treating with specific medications and/or probiotics.
I believe there must be something - ala 'post polio syndrome'. There are no explanations (or treatment, except for partial symptom relief) for what is happening to me. I believe there must be some connection, likely through auto-immune issues, perhaps related to the bowel surgery I had - which supposedly 'cured' me. I cannot be the only survivor experiencing these things.
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