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 diet (i.e. plant based, whole food/vegan) is most likely to help IBD patients achieve and retain remission?
Many medications and treatments for IBD are costly and long-term commitments. Dietary and lifestyle changes are a crucial first line of defense and often a more financially sustainable intervention. Patients and medical practitioners need more information about health-supportive diets.
CBDs seen to be a readily available and benign treatment for inflammation of many types. They may prove to be a treatment much easier on the body than the current course of drugs.
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.
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!
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.
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.
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.
How impactful is the financial burden of medication cost on medication adherence? What are the long term repercussions for patients who opt out of medication therapies?
The patient cost of commonly prescribed medications for the treatment of IBD often falls into Tier VI drug categories with higher out of pocket costs than standard co-pays. This expense may influence patients to opt out of proven therapies due to the nature of the expense leaving them vulnerable to increased flare rates and more frequent hospitalizations that ultimately cost more. Improving medication adherence on the front end could lead to an overall cost savings for patients and insurers alike.
What are the pros and cons of the different biologic medication options and how do they compare to one another? Is there a specific order that these should be tried?
With an increasing number of patients taking biologic medications (remicade, humira, entyvio), we need to know how these compare both in remission rates and side effects
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)