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!
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.
How likely is being put on Remicade for Crohn's Disease going to stop the recurrence of fistula's and abscesses to prevent having to have surgeries?
I have had four abscesses removed via surgery thus far and one fistula removed. However, another fistula has been found via a recent ultra sound I had done which I was told most likely will need to be treated with another surgery.
Does timing of colonoscopy affect ability to accurately diagnose UC new cases and/or flares of disease particularly if scheduled more than a couple of weeks out from onset or resolution of symptoms?
If mucosa is allowed to heal before procedure with biopsies, patient may be told either no dz or inactive dz when in fact tissue has healed in the time it took to get test scheduled and performed leading to under diagnosis or a delayed diagnosis. Should guidelines recommend a shorter timeline to procedure in suspected stable new cases or stable non urgent flares? Some gi docs schedules are booked out months in advance so delays in scheduling are common. If patients are told initially no disease but later symptoms resume, more tests procedures are required to eventually establish diagnosis and start treatment.
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.
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.
Can better tests be developed to confirm Crohn's and IBS-D diagnoses do or do not exist in patients?
Either diagnosis can take several rounds and types of testing which can take significant time and money. Additionally, when a patient has both conditions, the time to correct diagnosis and treatment is significant.
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.
Why isn't the BCIR procedure given as an option for patients who have severe UC that no longer are responding to meds?
In 2012 I had my colon removed due to Anal Cancer and Severe Ulcerative Colitis. I opted out of having Chemo and Radiation. My UC was so severe that I would have never made it through radiation treatments. Having to wear a bag was not what I wanted so I chose to get a BCIR under Dr. Rehnke at Palms of Pasadena in St. Petersburg, FL. It was the BEST decision I have ever made. I had UC for almost 30 years and suffered Daily. I feel as if I have a life now. My Quality of Life is unbelievable. There is nothing I can't do now. I don't have to memorize where bathrooms are anymore. I plan when I go to the bathroom instead of my body telling me when I go. It is amazing and I highly recommend it. I can not believe I suffered when this debilitating disease for so long. I had no idea about the BCIR. Everyone should know this is an option and can totally change your life. NO ONE should have to suffer like I did. Please let everyone know that this is an option. It is their choice from there on out, but at least people will know about it. It literally saved my life."
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.