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!
What is the comparative safety and efficacy of natural supplements (vitamin D, fish oil, turmeric) commonly used in IBD versus prescription medications?
Many of us try natural supplements instead of or in addition to prescription medications in the management of IBD. Are natural supplement products more safe or effective when compared to prescription medications? Is combining natural supplements with prescription treatments more effective?
After treatment failure with an anti-TNFa biologic medication (eg. Remicade, Humira), should patients attempt alternative anti-TNFa biologics or with biologic medications with different mechanisms?
Many patients experience diminished efficacy or complete loss of efficacy with anti-TNFa biologics. Which subsequent biologic medication option is most effective and safe?
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.
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.
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.
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?
I have had amazing success in treating my UC with an herbal formula (called Isatis Cooling) for about 15 years and wish that other people knew of this option. I understand that many other people have had similar success, however the medical community generally does not make patients aware of such options (even as a last resort prior to surgery or medications with known severe adverse side effects). It seems that their reasoning is that they are not aware of these options, or if they have heard of them (and their anecdotal effectiveness) they still do not even mention them to others because there is no "scientific evidence" to support their effectiveness or safety. I feel this is a disservice to patients. Doctors should be aware of the range of available options and help to spread this information (even with caveats about the lack of study), as mine thankfully did. In the best case, studies should be done on the effectiveness and safety of herbal remedies.
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)