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!

Published Studies

Year Publication Categories
Behavioral Strategies to Improve Cohort Retention within CCFA Partners


Earlier studies have shown that people who participate in surveys (such as CCFA Partners) may respond better to survey requests if these have a time limit (such as telling participants that surveys need to be done in 72 hours). This is called "scarcity." Other ways to improve survey response include messages targeting: paying it forward (that what you are doing will help people in the future), guilt, altruism (helping others), and self-serving (helping yourself). Our goal was to see if scarcity or these messages improved response rates within CCFA Partners. The scarcity group received a 'warning' email informing them that they will be sent a survey link the next day, and that they will have 72 hours to complete the survey. The control group received no warning email. We also tested the four different messages described above and a "control" message that just informed patients that it was time for their survey. We sent emails to a total of 8697 people within CCFA Partners asking them to complete their follow-up surveys. Of these, 2965 started their follow up survey. There was no difference between those in the 'scarcity group' as compared to control group. Scarcity was, however, more effective in the >50 age group. Of the messages, guilt resulted in a significantly higher response rate, while the other messages were no different than control. In summary, behavioral interventions applied to an internet-based IBD cohort have little benefit in improving response rates. Guilt had the strongest effect. The reasons that the other messages did not work may be that these interventions don't apply in an IBD population, that e-mail messages are not as effective, or that members of CCFA Partners are already very motivated to fill out surveys.

Full Scientific Abstract

cohort; response; retention; community; population; behavioral strategies; behavior

Research Methods, Study Updates

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