CCFA Partners - Patients helping patients

Helping to Improve the Quality of Life for IBD 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. To date, over 14,000 patients have been enrolled in the online registry to help us obtain a better understanding of issues facing IBD patients, how patients are functioning, what they eat, and how they receive treatment in different areas of the country. We also use the CCFA Partners network to provide topics for patients to discuss with their physicians to 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

  • 12,000 adult patients have signed up and completed the survey
  • Questions on drug usage, diet, environment, quality of life and alternative medicines
  • Regular interaction and follow up with patients – reminders to immunize, etc.

CCFA Partners Kids & Teens

CCFA Partners Kids & Teens, is a parallel study of childhood IBD. Nearly one fourth of individuals with IBD are diagnosed during the childhood or teenage years. Special consideration must be given to pediatric IBD patients who are undergoing rapid physical and mental growth and development. The effects of the disease and treatment in this population need to be better understood.

The goal of CCFA Partners Kids & Teens is to create a long-term community of patients who are engaged in research. This study, launched in August 2013, will focus on aspects of IBD that are most important to patients and their parents, including health behaviors, disease symptoms, and quality of life. The entire study takes place over the internet.

Key findings of CCFA Partners

  • 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.