The Crohn’s & Colitis Foundation of America is in the process of developing CCFA Partners, a new program aimed at enlisting patient and family participation in activities to further increase our understanding of Inflammatory Bowel Diseases (IBD). Specifically, CCFA is assessing the feasibility of building a long term patient registry to support IBD research.
CCFA sponsors many targeted research projects on an ongoing basis and one of the challenges is identifying IBD patients who are eligible to participate in clinical studies. By establishing a registry of patients from across North America, we can broaden participation and inform patients who are members of the registry of upcoming projects which may be of interest to them. Increased patient involvement can lead to more rapid research progress by shortening the time required to compile sufficient research data to complete the project(s).
At this time, we are investigating the feasibility of establishing such a patient registry by soliciting opinions and recommendations about how to organize the registry from a small, randomly chosen number of patients and/or their family members, and/or other CCFA members and supporters. You may be contacted by email or by direct mail in the near future and asked to complete a brief online survey by our Data Center at the School of Medicine of the University of North Carolina at Chapel Hill. These email survey invitations are sent from firstname.lastname@example.org and they contain a direct link to the survey in the body of the email. We hope you will support this most important initiative.
If you have questions, please contact us at: email@example.com
The investigators of CCFA Partners are:
Lloyd Mayer, MD
Chair, National Scientific Advisory Committee
Bruce Sands, MD, MS
Chair, Clinical Research Alliance
James D. Lewis, MD, MSCE
Vice-Chair, Clinical Research Alliance
Chair-Elect, National Scientific Advisory Committee
Sunanda Kane, MD
Chair, Patient Education Committee
- CCFA to match dollar for dollar, ALL DONATIONS received by Sept 15th! (northportproject.com)