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 are some modifiable lifestyle habits that have the most significant effects on IBD disease activity?
It would be great if we could identify key modifiable habits that effect disease activity (positive and negative) in order to understand ways to minimize disease activity? Some measures I would propose studying include: amount of sleep, alcohol use, smoking, hours worked per day or days per year, exercise, weight management, frequency of social/family interaction.
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?
There are four cousins on the paternal side of my family with IBD but no immediate family members. Would like more research on the family genes.
Thinking about future generations.
We know that Jews of European decent have a much higher chance of having an IBD. We know that the number of diagnosis of IBD has risen significantly in the last few decades. What is the one huge event that happened to the Jews of Europe just 70 years ago? The Holocaust. It could be a gene that was associated with another gene that promoted survival. It could have been a gene mutation due to living in extreme conditions. It could have been the terrible sanitation. It could have been the trauma that had been passed on to the following generations... there is much to investigate there. I come from a family of Holocaust survivors, myself. Thank you for your consideration.
I have begun to notice a recent correlation of my personal symptoms with seasonal allergies, and I am wondering if others have experienced this as well, or if antihistamines play any roll in this correlation.
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network