Validation of an internet-based cohort of inflammatory bowel disease (CCFA partners).
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.
*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.
Rachel L
RL
Randell
Millie D
MD
Long
Suzanne F
SF
Cook
Christina E D
CE
Wrennall
Wenli
W
Chen
Christopher F
CF
Martin
Kristen
K
Anton
Robert S
RS
Sandler
Michael D
MD
Kappelman
D000328:Adult; D035843:Biomedical Research; D015331:Cohort Studies; D003093:Colitis, Ulcerative / Q000517:prevention & control*; D003424:Crohn Disease / Q000517:prevention & control*; D005240:Feasibility Studies; D005260:Female; D005500:Follow-Up Studies; D006306:Health Surveys; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D011379:Prognosis; D057566:Self Report