Research Ideas  

Welcome to IBD Partners Research Ideas Page!

In this area you will be able to:

  • Propose, vote on, and discuss research ideas
  • View current studies
  • View published research

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You are an active participant in  IBD Partners research prioritization process! Have you ever had a question about IBD that you wish science could answer? Tell us what research is important to you!

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!

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.

Women's Health
last activity 10 months ago
17    3
Proposed Idea               Best Fit for Others

We should determine why the prevalence of IBD in developing countries is so low, yet immigrants from those countries and their children are at increased risk of IBD.

This question might help decipher the contribution of genetic and environmental factors (e.g. sunlight, the microbiome, exposure to antibiotics)

last activity over 2 years ago
43    1
Proposed Idea              

Can fistulae (particularly perineal/perianal) be caused by holding in BMs for long stretches of time? Specifically, is this occurring in children and teens with IBD?

I had diarrhea from age 11 (1971) without a diagnosis until 1978 when I had a perineal abscess drained by a gynecologist in the hospital. I could see that it was a fistula (dad had medical books around the house). About a week later, while on Cleocin and Keflex, my colon perforated and I almost died before expl lap and temporary colostomy to "rest" my gut. I'd had 7 years of public school, holding in the stool all day, until I could get home. I was not comfortable having diarrhea at school, either because of complaints from kids or smokers who dominated the bathrooms.

last activity almost 3 years ago
2    2

Long-term outlooks for patients who have had J-pouch surgery and reconnection

J-pouch surgery, as a final effort to mitigate UC symptoms, can be life-changing. However, it seems that little information is available describing the long-term outlook for patients who have had the procedure. With an increase in IBD diagnoses in children, it is safe to assume that rates of J-pouch surgeries in children will also increase. A longitudinal study following J-pouch patients for several years following their surgeries should be conducted to highlight any common complications or symptoms that appear over the course of time. This research would be especially significant for better advising younger patients and their caregivers.

Procedures And Testing
last activity over 4 years ago
3    1
Proposed Idea              

I'd like to see a study that investigates the children of male amd female Vietnam vers exposed to agent orange. I was the ONLY member of my family with UC/Chrohns. Now me + my daughters. My dad is a

Chemicals are been proven to alter DNA. Can this altered DNA result in chronic illness in unborn children? How will it affect our future generations? My descendents?

last activity over 2 years ago
1    1
last activity over 2 years ago
6    1
Proposed Idea              

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.

last activity almost 3 years ago
9    0
Proposed Idea              

Are children more likely to develop IBD if they are conceived through IVF?

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.

last activity about 2 years ago
1    0
Proposed Idea              

Are their any links between Crohns patients and their family having history of Autism including children?

last activity over 2 years ago
0    0
Proposed Idea              

What link is there between nutritional deficiencies in pregnant women with IBD and their children's health: dental cavities at young age, ADHD, etc?

Women's Health
last activity almost 4 years ago
1    0

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Published Studies VIEW ALL
Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases

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Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD

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Active Studies VIEW ALL
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