IBD site where YOU suggest what should be researched

Has anyone heard of/used this site? It's through the CCFA. You basically sign up, fill out a survey every 6 months, and then you can connect your health info to your account while filling out the surveys. Seems like a really good way to collect lifestyle data and how it correlates with your UC activity from a bunch of people if you're interested.

/ccfa.med.unc.edu/

More info.

www.ccfa.org/news/changing-the-research.html

My favorite part is that there's a section of the site where you can ask researchers what questions about IBD they should study. Really like the way its set up. It might not be super active but it's better to have something than nothing, imo.

Neat idea, but not sure researchers give a darn what "layman" people think. Odds are, any ideas people outside of the research field have come up with have already been though about

Marauder: true, but at least they can gauge demand for what sorts of questions patients want answered. It may also be possible that medical researchers don't treat patients and might be out of touch with what patients would like answered. Just guesses though.

I don't expect it to make huge waves in the research community, but I still like the idea of patients directly asking researchers what to study. It would be cool to see them respond by studying said question or linking us to studies that have already explored that question.