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!
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.
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.
Is it possible that zinc in galvanized potable water piping may be a factor in precipitating UC / Crohns? Alternatively, is it possible that stagnant water in galvanized piping might be a factor?
Three (3) flareups of IBD in my own past were all associated with moving into / living in domiciles which had been vacant for 2 - 6 months. All had galvanized water piping systems, and water was run / flushed for what seemed to be an appropriate time (10-15 mins.) prior to consumption.
I want to know how other people are affected since it has had a big impact in my own life being diagnosed when I was a teenager, and after the surgeries I've had that removed my colon and built a jpouch.
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.
What kind of medications/andor/diet can be beneficial for older Crohn's folks who have had multiple resections over the years and have a shorter bowel left?
Most all research seems to be preventive, and that is good for those who only have a few feet of good bowel left, but there is still nothing specific for management of Crohns short bowel people. There are alot of us who have been hanging around now 40+ years with 8 to 10 resections because surgery was the primary treatment (or steroids) in the 70's and 80's.
How do patients rank their severity of symptoms and quality of life, in comparison to the indices used in IBD studies to evaluate effective outcomes?
Studies commonly utilize scales such as CDAI to evaluate disease severity. For these scales to hold value in determining treatment outcomes, it is essential to evaluate whether the scales align with the perceptions of symptoms reported by patients.
I've been suffering with morning nausea the last 5-6 years in the winter. My Dr. says it's not my Crohn's. That appears to be in remission with imaging. I am seeing many forums online where others are suffering from nausea/vomiting intermittently with their Crohn's disease where it will last for a few months, then go away.