Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results.

摘要: Background: The widespread use of the Internet allows for unique research opportunities. We aimed to develop and follow an Internet-based cohort (e-cohort) patients with self-reported inflammatory bowel diseases (IBD) over time. Methods: We established e-cohort adults IBD (CCFA Partners) by recruiting through Crohn's Colitis Foundation America (CCFA) email rosters, CCFA Website promotion, social media, other publicity mechanisms. The baseline survey included modules on disease course activity, diet exercise, patient-reported outcomes (PROs). Baseline characteristics are summarized using descriptive statistics. Results: A total 7819 joined Partners August, 2011. median age was 42 years (interquartile range [IQR] 30–54), 5074 (72.3%) were female. A 4933 (63.1%) had (CD), 2675 (34.2%) ulcerative colitis (UC), 211 (2.7%) unspecified. For CD, mean short CD Activity Index (CDAI) 151.9 (standard deviation [SD] 106.4), 2274 (59.4%) in remission. UC, simple clinical activity index (SCCAI) 3.6 (SD 2.8), 937 (42.9%) questionnaire (SIBDQ) score 48.7 11.8). SIBDQ inversely correlated (P < 0.01). Morisky medication adherence (MMAS) 5.7 2.0). MMAS scores 0.01). Conclusions: CCFA is a novel e-cohort. Enrollment ongoing, surveys twice yearly. represents resource study PROs changes management time. (Inflamm Bowel Dis 2012;)