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!
Create a database that tracks the long-term outcomes for patients on biologic medications (Remicade, Humira, Cimzia, Simponi, Tysabri, and Entyvio) to assess their long-term efficacy.
As IBD research and treatments progress, biologics are becoming an ever-more staple part of a patients treatment regimen. However, many patients still fail to respond effectively to these medications while others can maintain long-term remission specifically because of them. I believe it is important for the IBD community to further explore why this variation in response occurs, and tracking those that respond effectively to these biologic drugs can, perhaps, help us to better understand why some respond while others do not.
How safe is it for IBD patients to become pregnant? How do medications affect the child, and what steps should the parents take before deciding to conceive?
There is very little research available to patients on the effects of IBD medication on unborn children. Many patients are left trying to weigh the risks themselves, without a complete understanding of the long-term effects.
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.
How many IBD patients take antidepressants to help manage their health? Does this help to fight off remission by controlling depression?
Anything that prevents remission is important!
Diarrhea is a big problem in IBD, and it can be caused by many different factors. I was wondering if we might help each other by discovering what everyone uses and how well it works.
Not every patient is aware of options for controlling this distressing symptom
Suffered two Incidence of Squamis Cell Carcinoma of the Lower Lip since being on 6mp
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?
Several studies have already been done in Israel at the Meir Institute with very promising results. A placebo controlled study with medication-resistant patients showed a remission rate approximately the same as leading medications. (~50% clinical remission.) Creating safer medications that are also less expensive than current medications should be a high priority, particularly given the promising results, both clinical and anecdotal, and the rising approval of medical cannabis across the US.
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?
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.
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)