CCFA Partners - Patients helping patients
CCFA Partners is an ambitious program from the Crohn's & Colitis Foundation of America (CCFA) designed to improve the quality of life for patients living with inflammatory bowel disease (IBD) through research and education. We plan to enroll at least 10,000 or more patients in an online registry to obtain a better understanding of issues facing IBD patients, how they are functioning, what they eat, and how they receive treatment in different areas of the country. We use this network to provide topics for patients to discuss with their physicians and to help improve their quality of life.
Crohn’s Disease, Ulcerative Colitis
CCFA Partners is a new and exciting program that partners CCFA with IBD patients in an online community. By using the Internet we can rapidly and efficiently collect information on IBD patients from across the country in order to learn about the impact and health status of IBD patients.
The registry will focus on the health of IBD patients, their diet, prevention activities, and current treatment. By focusing on reports directly from patients, this initiative will be an important addition to many of the other clinical research projects supported by the CCFA that have relied mainly on reports from physicians.
Over time we will also provide you with tips for better health and prevention of complications that you can share with your doctor to see if they are right for your situation. We may ask you if you'd like to be part of other special surveys or research studies.
Explanation of Participation:
CCFA Partners is a research initiative, not a fundraising effort. By joining, you will not be asked for monetary contributions—we only ask that you complete a short online survey twice a year on your health history.
To be eligible, you must have been diagnosed with Crohn's disease and ulcerative colitis. If you choose to participate, we will ask you to provide detailed information about your disease and treatment. Then, we will contact you every three months to update you on the program’s progress and to provide you with the latest information about IBD. In addition, every six months we will ask you to update your medical information. From time to time, we may also let you know about new research studies for which you might be eligible. It is completely up to you to participate in these studies.
Completing the initial confidential online survey should only take 20-30 minutes. The survey can be done all at once or over time—it does not have to be done in one sitting. The survey is implemented by the CCFA Data Management Center at the University of North Carolina at Chapel Hill (UNC). Your email address will be tied to your survey so we can contact you in the future when it is time for a follow-up. Your information is kept completely confidential on UNC’s secure servers, and is only accessible through your unique email address.
All questions are optional and you can withdraw from the study at any time. We will not publicly associate you with any responses in any reports of survey results or release your information to others without your permission. There is no cost to participate and there is no compensation for taking the survey.
If you are a patient living with Crohn's disease and ulcerative colitis, we hope you will consider helping us. We believe this project has excellent long-term potential to improve our understanding of the impact of these diseases. If you are not a patient, please pass along this information about CCFA Partners to a loved one or friend living with IBD who may want to contribute to research aimed at improving the quality of life of IBD patients.
For More Information: https://cgibd.med.unc.edu/ccfapartners/index.php