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 percentage of people who have UC/Crohn's have also been diagnosed with Fibromyalgia? In addition, how long after having UC/Crohn's did Fibromyalgia symptoms begin?
There are many overlapping symptoms between UC/Crohn's and Fibromyalgia. For myself I developed Fibromyalgia after a severe UC flare. I believe chronic pain and fatigue go hand and hand with UC/Crohn's.
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?
Why is Crohn's disease being diagnosed so much more frequently in the past 2-5 years? Is it better diagnostics and understanding of the disease or that more drugs are being made to treat it?
To the lay person with IBD, especially those of us diagnosed with UC 10, 15, 20 years ago, so many of us are now being told we may have Crohn's and going through more testing to identify is that is so. It is also interesting that the heading "IBD" seems to more often refer only to Crohn's. It's as if those of us with a UC diagnosis are the ugly step-sister swept into a corner. And I have to wonder if there is as much research going on for UC as for Crohn's.
I am going in for my first check up visit to the GI after being diagnosed with Crohn's Disease. What information should I bring with me so the visit is actually helpful to myself and the Dr? I have been on Humira for 2 months now, so I'm assuming I should have a list of the different side effects I've had, but should I also be bringing in a list of the foods I've been eating, sleep schedule etc?
Is there a relationship between Crohn's and chronic acne? Could long term antibiotic use for acne be associated with the development of Crohn's in young adults?
Acne is a common problem for many teenagers and young adults. It is important to get a better grasp on any possible relationships between inflammatory skin conditions such as acne and Crohn's.
By monitoring several IBD forums, I see that people frequently have questions about various neurological complications like numbness, tingling, nerve pains etc. Current research is mixed on whether or not there are neurological extra-intestinal manifestations of IBD.
What is the effect of vagus nerve stimulation in ulcerative colitis? What is the effect of an implanted VNS device on UC? What is the effect of a transcutaneous VNS device on UC?
Vagus nerve stimulation has been studied in Crohn's disease with promising results, and needs to be studied in ulcerative colitis, so that all patients with IBD may have access to this new therapy that has shown success even for patients who did not succeed on oral or IV medication. For example: https://www.newsday.com/news/health/crohns-drugs-feinstein-institute-1.20780533
This question is relevant to me because I was conceived through IVF, and my mom wonders if that may have something to do with my diagnosis of Crohn's. Her reasoning is that mothers who choose IVF have to take very high doses of hormones, so she wonders if that may have negative effects on the mother that can affect the baby's health. I think this is an important question because it could affect how mothers choose to have children, especially if IBD runs in their family. It may also be helpful for children conceived through IVF to know their risks, so they can be aware of it and be followed more closely by their PCP, especially if they have GI troubles.
Can testing be performed on our children to determine if Crohn's Disease will be a factor in their lives? And if so, their risk percentage?
I'd like to know ahead of time the risks to my children, grandchildren, etc. of developing this disease. When my children date, it's often a question that comes up and can be scary to those contemplating children in the future.