Helping to Improve the Quality of Life for IBD 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.

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.

CCFA PARTNERS: Internet-based registry of patient reported disease outcomes

• ~1200 adult patients have signed up and completed the survey
• Pediatric survey will be launched this fall
• Questions on drug usage, diet, environment, quality of life and alternative medicines
• Regular interaction and follow up with patients – reminders to immunize, etc.

Key findings of the study-

• Disease prevention- Patients with IBD are more likely to develop weak bones, infections like influenza and tuberculosis and certain cancers of the skin, cervix and colon, depending on the type of medications they use.
• Medication Adherence- Most patients are not taking their IBD medications correctly all of the time. In general, people felt better when they had a high medication adherence score.
• Quality of life: Patients with severe ulcerative colitis had low quality of life, but quality of life returned to around average when patients had surgery to remove their colon and replace it with an internal pouch
• Patient reported outcomes - IBD patients had more anxiety, depression, fatigue and sleep disturbance, and less social satisfaction than the general population. Using corticosteroids made all of the outcomes worse.