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 physical "stress" of getting too little sleep (less than 6 or 7 hours per night) exacerbates my symptoms. This is a phenomenon I have observed over the last 30+ years. Unfortunately, I also have 3 sleep disorders. Therefore, despite the medications I take, I can't tell whether I've had good quality sleep even when I sleep 8 or more hours. Do patients who don't respond well to Crohn's treatments have undiagnosed sleep disorders?
Sequence the DNA of components of patients' microbiomes to find any associations with variables like severity of symptoms, location of disease, extra-intestinal manifestations and response to medications.
The 'genome' of a patient's microbiome could provide guidance in treating with specific medications and/or probiotics.
What pain treatment options (pharmacologic or otherwise) do IBD patients find most effective, and what are the risks associated with these treatments.
Many pain medications are addictive and/or harmful, particularly in IBD patients. Pain is a common symptom of IBD. I would like to explore patient experiences of the efficacy of pain treatments including: acupunctue, message therapy, heat therapy, NSAIDs, acetaminophen, SNRI antidepressants, tramadol, opiate pain medications. Either through literature review or additional research, it would be valuable to see a comprehensive review of risks and benefits of common pain treatments specific to use in IBD patients.
Is there a correlation between the use of NSAIDS (Ibuprofen) or other medications known to cause a "leaky gut" and the onset/development of IBD?
I took a large amount of Ibuprofen throughout my teen years for migraines. I have been told that taking Ibuprofen now can cause me to come out of remission due to causing a leaky gut and so I am curious to see if these types of medications can cause or trigger the onset of IBD in adolescents or in patient who chronically take these forms of medications.
What is the success of remission for people* who have surgery, or resection, versus those who are treated by medications only? (*Note: people who qualify for surgery)
I heard from a parent of a teen with IBD that the doctor wanted to avoid surgery. I have been in remission for years after I had a resection.
I propose to look at the incidence of periodontal disease in IBD patients, and to examine if there is any correlation to the disease itself, or to medications used for disease control.
Anecdotally, there seems to be a positive correlation; however, hard data seems non-existent. With the known relationship between periodontal disease and heart disease, it would be important for IBD patients to know if this is an issue they need to stay on top of.
What is unique about the histology and/or immunology of fistulas that limit their response to current immunomodulator therapies?
None of the currently approved or clinical stage immunotherapies for IBD have shown to offer substantive benefits in the improvement or healing of fistulas. This is continues to be a significant gap in the non-surgical treatment of fistulizing disease.
Can there be a data study (or is there one in progress) to find out what percentage of people have had to go off of different IBD medications because of contracting COVID and needing to boost immune?
I am very scared that if I contract covid I will have to go off of my medication which I have worked so hard to fit to my disease and help stabilize my symptoms. I believe many others are feeling this way right now.
Do changes in manufacturing processes of Biologics alter the clinical impact (treatment success and/or adverse events)?
Biologic medications are developed through a complex process of using living organisms to harvest the biologic proteins. Manufacturers sometimes alter the manufacturing process, and these changes have the potential to cause slight changes in the final product. There is a lack of data/research regarding the impact of these slight changes. Furthermore, biosimilars (biologics developed by new manufacturers with different manufacturing processes), are pending FDA approval. Biosimilars will not require as extensive clinical testing prior to approval, compared with the original manufactured products. We ought to collect extensive data to better understand if slight changes in biologic proteins have a clinical impact.
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.
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners
Patient-Reported Outcomes and Quality of Life in Patients with Ileal Pouch-Anal Anastomosis (IPAA)