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!
“Milk fats increase the amount of taurine conjugated bile acids that promote growth and metabolic activ ity of sulphate reducing, bile acid tolerant bacterial species, which in turn stimulate pathogenic immune responses in genetically susceptible hosts” Sartor, R. B. Nat. Rev. Gastroenterol. Hepatol. 9, (2012)
Multiple doctors have recommended that I start treatment for my Crohn's disease. There are many options from diet change, steroids, and immonosuapresants. My CD is very active and I have already had two surgeries.
Recent data (Kigerl et al. 2016 (JEM), Bourassa et al. (Neuroscience Letters) and others) have suggested that dysbiosis in the gut, similar to that observed in IBD can affect both recovery following neurological injury and general neurological health. Examining reported levels of comorbidity could provide insights into whether further study of these relationships is warranted. This would, hopefully, lead to better outcomes for both neurology and IBD patients.
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.
When I was diagnosed with Crohn's, my GI told me that diets don't work. After my GI recommended Humira, I decided to try SCD before I tried such a potent medication. The diet started working within days and, by the end of the first month, most of my symptoms were gone. Today it's been over a year and a half since I've had any significant symptoms. I would like to know if SCD works for others and, if so, what percentage of patients.
I kept very detailed notes on food and symptoms when I used diet to end a significant flare (6 mos.). I went into remission within 2 wks. Any researcher interested in notes?
useful addition to current research
Do patients have better control of their disease when they communicate with other patients (via support groups, camps, online forums, etc)?
Support groups can be a great opportunity to learn more about the disease from the experience of others. They can be a resource of both good and poor advice. I suspect the overall impact of patient peer support is positive of disease management.
I propose a genetics-based investigation that explores why some drugs work for some people but not others.
Many IBD patients go through years of pain and suffering because they haven't found "their drug" yet. This immense suffering could be reduced if we could determine which individuals respond to which drugs and WHY, as determined by their environment and DNA.
In light of recent data from Partners showing a link between depression and a subsequent flare, im curious how many patients seek/receive treatment so as to minimize the risk of a flare. For those that don't, I wonder why and what barriers might impact access to care.
How does a patient's communication with their physician impact their quality of care? What communication techniques can be implemented in order to improve the patient-physician relationship?
Many patients find it difficult to talk to their physicians, this can prevent their doctors from knowing the full picture and may increase incorrect diagnoses or delay the diagnosis. Uncontrolled disease can be harder to control and controlling it correctly from the onset is crucial in disease management.
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