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 percentage of patients fecal caloprotectin levels do not correlate (well or at all!) with colonoscopy results and for those patients, are there common factors that can be described.
For some patients like myself, fecal caloprotectin levels have been either borderline or normal since my surgery, but on colonoscopy active inflammation is seen (ulcers, erythema) at anastomosis or terminal ileum. It would be good to understand if there are some patients for whom this marker can't really be used to assess for recurrence of disease.
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.
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.
Since crohn's disease appears to be site specific, a location analysis may yield some additional clues on what triggers the inflammation.
What are the best surveillance techniques after bowel resection surgery? When should medical treatment be initiated? How often should colonoscopies be performed?
It looks like the current research only recommends a colonoscopy 6-12 months post resection, but there is very little information as to how to monitor after that.
It was 40 years ago that I had surgery at the Cleveland Clinic by Dr. Fazio for Crohn's dis. I have diarrhea secondary to the surgery but have not had a recurrence. How common is this? All insurance policies say I must report that I have Crohn's.
Maybe patients can be cured. I think a survey of all patients who have had extensive surgical resection with temporary iliostomy may reveal that there is a chance for a cure.
Strictures are a problem for many IBD sufferers. More non invasive methods to deal with these should be developed so that surgery or colon removal isn't pressured by doctors and to save the length of the colon as much as possible.