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!
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.
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.
I am guessing it's complications and/or weight loss or failure of the immune system. Wondering if this is trackable in order to develop prevention ideas.
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.
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.
I moved from New York City to Burlington, VT and my medication went from $6000 every 2 months to $24k. It quadrupled because I crossed state lines. I can't be the only one who is shocked by this and are curious why such a thing could happen.
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.
What factors (medicine, disease trajectory, lifestyle, diet, etc.) are important for getting into long-term remission? A scientific study of people with IBD who have attained long-term remission.
There are many research studies out there that focus on the details of IBD, whether that be particular medicines and their efficacy or the biological processes of autoimmunity in the gut. This research question asks researchers to take a step back and consider the possibility of there being other factors that have not been previously considered. For example, do people with IBD who attain long-term remission have particular variants of IBD? Do they combine certain medicines and lifestyle factors? My IBD was quite severe between 2000 and 2003. I've now been in long-term remission since 2006, with only very mild rises in inflammation as related to lactose intolerance once every few years (as measured by fecal calprotectin tests). My doctors never seemed concerned about those slight rises of inflammation, and my calprotectin levels always returned to normal rather quickly. It could be that I was just lucky in combining a number of lifestyle, diet, medicine, and other factors. I've gotten lots of questions from other patients with IBD. Many want to know what worked. I don't know that what worked for me would work for others. And I think that it would be better to look at these kinds of factors in a group of IBD patients who have attained long-term remission.