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 like to know the incidence of relapses of disease (Crohns, UC, other IBD) immediately following a colonoscopy, when the patient has been in remission prior to the test.
I was in remission with my Crohns for years and had an colonoscopy and have had active disease ever since, for over 3 years.
Gives insight into options other than medication when nothing else has worked.
Can ulcers be healed using Hyperbaric Oxygen Therapy? Is this an effective method to help promote healing in the intestines?
I think it is important to give IBDers the tools to help their body heal. Hyperbaric oxygen chambers have few risks and are non invasive. If we can speed up the healing of our intestines, this would benefit the patient greatly in their ability to become healthy again after finding a treatment that calms the inflammation.
What portion of IBD patients also have IBS? How can IBS be accurately diagnosed in patients with IBD? How can patients/clinicians identify symptoms due to IBD versus IBS, and what treatments are best?
Irratable bowel syndrome (IBS) has many of the same symptoms as inflammatory bowel disease (IBD). Many patients with IBD may also experience IBS making it difficult to know how to treat given that the two conditions are managed differently. Clinicians sometimes attribute symptoms of abdominal pain or diarrhea to IBS without further investigation. I would like to see further study into why many patients continue to experience IBD symptoms when clinical signs suggest remission, and how to best manage these symptoms. I would also like to see how frequently IBS is inaccurately diagnosed.
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.
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.
Given the increased interest and implications for altered gut microbiome in IBD, I think it is important that investigations into how surgical treatments affect the new digestive structures. Looking comparatively at pre-surgery microbiomes and post-surgery microbiomes may give insights into how to most effectively treat UC, should the mechanisms that cause the disease still act in the absence of a colon.
Develop non-invasive methods to remove hemorrhoids and perianal skin tags from IBD patients without the risk of ulcers, harm to sphincter, etc.
IBD patients are more much more likely to get hemorrhoids and skin tags (up to 37% of Crohn's and 25% of Colitis patients get skin tags - whereas only 4.4% of the general population gets hemorrhoids). But IBD patients either don't get them removed, or else risk significant harm in doing so. Innovative methods are needed to address the needs of this significant patient base.
J-pouch surgery, as a final effort to mitigate UC symptoms, can be life-changing. However, it seems that little information is available describing the long-term outlook for patients who have had the procedure. With an increase in IBD diagnoses in children, it is safe to assume that rates of J-pouch surgeries in children will also increase. A longitudinal study following J-pouch patients for several years following their surgeries should be conducted to highlight any common complications or symptoms that appear over the course of time. This research would be especially significant for better advising younger patients and their caregivers.
A test is needed that can tell what kind of IBD a person has. Many medications are geared for UC or CD but not for both and many people who have a diagnosis of UC latter find out they have CD.
There is currently a test for this, however it isn't very accurate. The test needs to be refined so it is accurate. Knowing what type of IBD one has can change the type of treatment one would recieve.