From the CCFA:
Patients helping patients toward a better quality of life
We are in the process of building a groundbreaking online research and educational initiative called "CCFA Partners," and we invite you to join us! CCFA Partners is a completely new and very different approach to inflammatory bowel diseases (IBD) research. The initiative's goals are to improve quality of life for patients with IBD through research and education.
How does CCFA Partners work?
We plan to enroll 10,000 or more IBD patients from across the country and hope that you will be among them. We will gather information about you and your experience with IBD through a brief confidential online survey. We will contact you by email every three months to let you know about our progress, and provide you with educational information about IBD and IBD therapies. Every six months we will ask you to update us about your condition in a brief follow-up survey. There is no cost to you for participating. All data will be collected using a secure Internet server, so your personal information is safe and confidential. To start your survey, please click the special link at the end of this e-mail.
If you decide to join CCFA Partners now, you can opt out at any time in the future.
We hope that you will participate fully -- the more people who participate, the more reliable the research results will be! Thank you for your consideration.
If you are 18 or older and want to continue to the survey, please , start your survey here. [update: the link appears to be not working for me, seeing if there is a different link or a workaround since this sounds like a great opportunity for many]