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!
Validation of an Internet-based Cohort of Inflammatory Bowel Disease (CCFA Partners)
CCFA Partners is an internet cohort of patients with self-reported inflammatory bowel disease, or IBD. In this study, investigators obtained medical records from the doctors treating 99 participants to confirm that they do have IBD. Doctors confirmed IBD diagnosis in 97% of the participants, and confirmed disease type (Crohn's disease or ulcerative colitis) in 97% of those with IBD. These findings support the use of self-reported IBD in CCFA Partners.
Full Published Manuscript
community; population; patient-reported research
|Research Methods, Study Updates|