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!
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.
Please resesrch chronic pouchitis in patients who have had total colectomies w/placement of ileal/ anal pouch.
Many of us pouchitis patients are still suffering post-op and had no idea this could happen to us.I have been suffering for 15 yrs.Thank You for your effort.Maybe a Dr. could speak on this also
Peppermint oil has been used to treat GI conditions including IBS. Peppermint oil has many mechanisms of action which may make it effective in treating pouchitis. Peppermint oil is an antispasmodic, it is antibacterial, and anti inflammatory. Peppermint oil, delivered directly to the pouch, via a pH dependent delivery system may be effective in the management of pouchitis.
How impactful is the financial burden of medication cost on medication adherence? What are the long term repercussions for patients who opt out of medication therapies?
The patient cost of commonly prescribed medications for the treatment of IBD often falls into Tier VI drug categories with higher out of pocket costs than standard co-pays. This expense may influence patients to opt out of proven therapies due to the nature of the expense leaving them vulnerable to increased flare rates and more frequent hospitalizations that ultimately cost more. Improving medication adherence on the front end could lead to an overall cost savings for patients and insurers alike.
What are the pros and cons of the different biologic medication options and how do they compare to one another? Is there a specific order that these should be tried?
With an increasing number of patients taking biologic medications (remicade, humira, entyvio), we need to know how these compare both in remission rates and side effects
to help women make more informed decisions regarding pregnancy
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.
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