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Validation of an Internet-Based Cohort of Inflammatory Bowel Disease (CCFA Partners)

Randell, Rachel L. BA*; Long, Millie D. MD, MPH†,‡; Cook, Suzanne F. PhD§; Wrennall, Christina E. D. BA; Chen, Wenli MS, MA; Martin, Christopher F. MSPH†,‡; Anton, Kristen MS†,‖; Sandler, Robert S. MD, MPH†,‡; Kappelman, Michael D. MD, MPH†,‡,¶

doi: 10.1097/01.MIB.0000441348.32570.34
Original Clinical Articles

Background: As traditional methods have become increasingly difficult, the Internet offers a mechanism for conducting survey research quickly and efficiently. However, the validity of this research depends on the ability of respondents to accurately report health status. We used a large Internet-based inflammatory bowel disease (IBD) cohort to validate self-reported IBD against physician reports.

Methods: Between June 22, 2012, and April 01, 2013, all participants of CCFA Partners (n = 6681) were invited to participate, and 450 were selected by random stratified sampling. We sent physicians a survey to confirm IBD diagnosis and characteristics. We used descriptive statistics to compare data.

Results: A total of 4423 participants (66%) indicated interest. Of 450 selected, 261 (58%) consented, and physician reports were obtained for 184 (71%). Physicians confirmed IBD status in 178 (97%) and type in 171 (97% of confirmed). The matching between patient and physician reports for Crohn's disease (CD) was 82% for disease location, 89% for the presence of perianal disease, and 46% for disease behavior. For ulcerative colitis (UC), disease location matched 54% of the time. Physician reports confirmed the status of ever having bowel surgery for 97% of CD and 94% for UC and confirmed current pouch or ostomy in 84% of CD and 81% of UC.

Conclusions: Self-reported IBD in CCFA Partners is highly accurate, and participants are willing to release medical records for research. Self-reported phenotypic characteristics were less valid. The validity of IBD diagnoses among the participants of CCFA Partners supports the use of this cohort for patient-centered outcome research.

Article first published online 21 January 2014

*University of North Carolina School of Medicine, Chapel Hill, North Carolina;

Center for Gastrointestinal Biology and Disease, and

Division of Gastroenterology and Hepatology, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina;

§Worldwide Epidemiology GlaxoSmithKline, Research Triangle Park, North Carolina;

Section of Biostatistics and Epidemiology, Geisel School of Medicine at Dartmouth, Lebanon, New Hampshire; and

Division of Gastroenterology and Hepatology, Department of Pediatrics, University of North Carolina, Chapel Hill, North Carolina.

Reprints: Rachel L. Randell, BA, University of North Carolina at Chapel Hill, Campus Box 7080, Chapel Hill, NC 27599-7080 (e-mail:

Supported by the Crohn's and Colitis Foundation of America with additional support from GlaxoSmithKline and the National Institutes of Health (P30 D34987).

The authors have no conflicts of interest to disclose.

Received November 07, 2013

Accepted December 10, 2013

© Crohn's & Colitis Foundation of America, Inc.