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!
Happiness research is finding successful impact with many types of disorders. How might it help with UC sufferers?
Develop a SPECIAL TAPE that will help hold the osty appliance on the skin when your out-put is very watery and there is gas involved and your stoma is sucking in!
I have had a very BIG problem of appliances blowing (2 to 4 times per day) when the stoma is sucking in and the out-put is watery and gas is involved. When this is happening and you are changing that much your skin is raw. You are burning through appliances left and right (cost). Not to mention your physiological well being!!
Develop nutritionally sound and bio-available nutritional supplement(s) addressing long term health issues associated with poor vitamin/ mineral/ nutrient absorption due to rapid transit time, medication and/ or scarring of the intestinal lining.
Long term chronic IBD often includes development of nutritional deficiencies due to diet, eating patterns, medication side effects and intestinal scarring which are difficult to overcome using traditional supplements due to low bio-availability, supplement form, difficulty incorporating into liquid, soft or normal diet, nutritional completness.
Since the increase in Humira dosage from 40mg 2x month to 40mg weekly, i experience significant motion sickness while driving and flying. Has this been reported by any other users?
Understanding undocumented side effects is important for long term users of Humira, as well as, for new users . Side effects such as motiin sickness can cause impaired driving and be frightening when it's not anticipated
There is a significant population of patients for whom biologics are no longer a viable or recommended treatment. Our healthcare going forward is complicated by the permanent effects of these medications on the body's systems.
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.
Is there a correlation between women's monthly menstruation and IBD-related flares? If there is a correlation between these two event, what can be done to reduce flares and/or reduce flares severity?
As a woman with IBD, I have experienced a once monthly abdominal pain since being diagnosed with IBD that feels like it is intestinal and subsides after one part of the cycle concludes. GI's have confirmed they have noticed women w/IBD often complain of IBD pain at specific times in the menstrual cycle.
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.
I am going in for my first check up visit to the GI after being diagnosed with Crohn's Disease. What information should I bring with me so the visit is actually helpful to myself and the Dr? I have been on Humira for 2 months now, so I'm assuming I should have a list of the different side effects I've had, but should I also be bringing in a list of the foods I've been eating, sleep schedule etc?
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