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!
The numbers of IBD patients using medicinal marijuana is increasing at a rapid pace and many patients who use it feel that it improves their quality of life. We need research-based evidence to determine the underlying connection. Does it improve symptoms that make patients feel better (pain, loss of appetite, decreased stress and increased sleep), or does it actually have an anti-inflammatory effect on the gut?
How many people who have had a resection suffer with ongoing diarrhea? What medications/OTC drugs are most effective with this problem?
This is important for quality of life... and perhaps surgeons will be more conservative in cutting if there is a chance to save important regions of the intestinal track!
I would love to see a study that compared quality of life and remission rates of the SCD diet, Paleo Diet and/or Autoimmune Paleo diet on Crohns and UC sufferers.
Patient testimonials have caused these diets to be incredibly popular with managing IBD symptoms. However the main argument continuously held agains them is the lack of research evidence showing their effectiveness. This sounds like the perfect role of the CCFA, which is charged with conducting research to help those in the I D community. There are now several companies offering frozen Paleo and AIP meal deliveries to individuals for about $300 per week, making a study where participants are sent all 21 meals in a week (to cut down on variation between adherence) cost effective and feasible.
Do those who have had surgery find their quality of life better with the ostomy or by stooling through the pouch?
I have a recent diagnosis of Ulcerative Colitis and think that I will need to have surgery in the near future.
I have been tested negative for celiac and gluten sensitivity, yet avoiding gluten improved my flare-ups, symptoms, and overall quality of life tremendously.
How many IBD patients have ever been referred for counseling or offered an antidepressant by their gastroenterologist?
Depression and anxiety levels are very high in this population. Extending care to the whole person would make sense in managing disease and quality of life.
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."
How do patients rank their severity of symptoms and quality of life, in comparison to the indices used in IBD studies to evaluate effective outcomes?
Studies commonly utilize scales such as CDAI to evaluate disease severity. For these scales to hold value in determining treatment outcomes, it is essential to evaluate whether the scales align with the perceptions of symptoms reported by patients.
Inflammatory Bowel Diseases Can Adversely Impact Domains of Sexual Function Such as Satisfaction with Sex Life
Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases