Rachel L. Randell|Millie D. Long|Suzanne F. Cook|Christina E. D. Wrennall|Wenli Chen|Christopher F. Martin|Kristen Anton|Robert S. Sandler|Michael D. Kappelman
Validation of an Internet-Based Cohort of Inflammatory Bowel Disease (CCFA Partners)
University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|Research Triangle Park Foundation|GlaxoSmithKline (United States)|University of North Carolina at Chapel Hill|Dartmouth College|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill
traditional methods become increasingly difficult internet offers mechanism conducting survey research quickly efficiently however validity research depends ability respondents accurately report health status used large internetbased inflammatory bowel disease ibd cohort validate selfreported ibd physician reportsbetween june 22 2012 april 01 2013 participants ccfa partners n 6681 invited participate 450 selected random stratified sampling sent physicians survey confirm ibd diagnosis characteristics used descriptive statistics compare dataa total 4423 participants 66 indicated interest 450 selected 261 58 consented physician reports obtained 184 71 physicians confirmed ibd status 178 97 type 171 97 confirmed matching patient physician reports crohns disease cd 82 disease location 89 presence perianal disease 46 disease behavior ulcerative colitis uc disease location matched 54 time physician reports confirmed status ever bowel surgery 97 cd 94 uc confirmed current pouch ostomy 84 cd 81 ucselfreported ibd ccfa partners highly accurate participants willing release medical records research selfreported phenotypic characteristics less valid validity ibd diagnoses among participants ccfa partners supports use cohort patientcentered outcome research