CCFA Partners - Patients helping patients
CCFA Partners is an ambitious program from CCFA designed to improve the quality of life for patients living with inflammatory bowel diseases (IBD) through research and education. We have enrolled 14,000 adults and over 700 kids and teens 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.
Patient participation guidelines
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 or 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 researchers interested in the data
We anticipate that CCFA Partners will provide a vehicle for a number of ancillary studies, including secondary data analyses, supplemental Internet studies, e.g., educational interventions, biospecimen collection and chart reviews. The registry may also be used as a recruitment tool for independent studies.
Access to this information is restricted to the IBD research community. To register as a researcher, please go to CCFA Partners and complete a short form.