Research Ideas  

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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!

Published Studies

Year Publication Categories
2013
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD

Summary

After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time.


Full Scientific Abstract

Keywords
kids & teens; K&T; pediatric; age; kids; teens; community; population; resource

Research Methods, Study Updates
2012
A Randomized Trial of Electronic (E-mail) Educational Prevention Messages within the CCFA Partners Cohort

Summary

It is recommended that patients with inflammatory bowel disease, or IBD, get an influenza, or "flu" vaccine every year. The flu vaccine is especially important for patients taking medication to suppress their immune system. This study showed that 1 in 3 IBD patients did not get a flu vaccine in 2011. Receiving an email reminder from the CCFA Partners program did not make patients more likely to get a flu vaccine.


Full Scientific Abstract

Keywords
education; preventive interventions; prevention; intervention; community; population; outreach

Research Methods, Study Updates
2011
Status of Prevention in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort

Summary

Patients with inflammatory bowel disease, or IBD, may be more likely to develop weak bones, infections like influenza and tuberculosis and certain cancers of the skin, cervix and colon, depending on the type of medications they use. Fortunately, there are simple activities that can prevent these from occurring. In a survey of over 7000 patients with IBD, only about half had a bone density scan or took calcium or vitamin D supplements to promote bone health. Only 40% reported having a skin exam and 16% reported always wearing sunscreen to prevent skin cancer. Less than two thirds had an influenza (flu) vaccine. These results show that not enough patients are doing simple activities to prevent weak bones, infections and cancers that may be related to IBD.


Full Scientific Abstract

Keywords
preventive; care; active disease; flare; prevention; risk; educational interventions; intervention; education; outreach; community; population

Research Methods, Health Maintenance

Active Studies VIEW ALL
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