There has been growing interest in the use of social media for managing chronic illnesses. Few studies have examined how patients with Inflammatory Bowel Disease utilizes social media as a tool for managing their health. In this study we surveyed patients in Crohn's and Colitis Foundation partner's database to get a better understandings of patient's preferences for social media usage. We found that 32% of IBD patients utilized social media for disease management. We also found that the majority of patients were unsure of the quality of IBD related information posted on social media and most agree d that the quality could be improved if the Crohn's and Colitis Foundation contributed to posts. The leading concerns surrounding social media use were privacy/confidentially and lack of trust of information posted. In summary, IBD patients expressed interest in utilizing social media to aid in the management of their disease, though lack of knowledge about quality exists as do concerns about the privacy/confidentially of posts.

This manuscript describes the creation of CCFA Partners and the first 7,819 participants. Of the people who took the first surveys, 72% were women, the median age was 42 years, 63% had Crohn's disease, 34% had ulcerative colitis and 3% had other IBD. CCFA Partners is a unique resource to study patient outcomes and satisfaction, quality of care and changes in disease management over time.