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!
I would like more research done on using the combination of a biologic (Humira) and Azathioprine (Imuran) together for treatment of crohns. Are the benefits really worth the risk? or is the risk not that bad?
I am on both of these meds and I have been questioned by my pharmacist about taking both of them together. I have read about the risks, and I'm not sure if I really do need both of the drugs. The information I have read seems to imply that getting cancer at some point is almost a certainty.
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.
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.
Are biosimilars equally effective maintaining remission in patients who achieved remission with the “brand” TNF-blocker?
I was at a recent CCF educational session and the gastroenterologist giving a talk said that VA patients, stable on infliximab, were switched to the biosiomilar, presumably for cost. Some did not do was well after the switch. If someone is stable on a TNF-blocker, what is the risk of their illness worsening if switched to the biosimilar?
What treatments used for Crohn's Disease are more effective for symptoms that are primarily non-intestinal such as inflammatory arthritis, eye symptoms & skin rashes.
Current treatments seem to address intestinal symptoms and non-intestinal symptoms require additional symptomatic treatments. Too much & too imprecise.
A study by David Underhill in "Cell Host & Microbe" suggests a link between Malassezia in the gut and Crohn's Disease. Crohn's patients had high concentrations of Malassezia on their intestinal walls compared to almost none in healthy patients. Adding this fungus to the gut in mice exacerbated inflammation seen in Crohn's.
Symptom Clusters in Adults with Inflammatory Bowel Disease
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners