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Inflammatory Bowel Diseases:
doi: 10.1097/01.MIB.0000435441.30107.8b
Clinical Review Article

Challenges in Designing a National Surveillance Program for Inflammatory Bowel Disease in the United States

Long, Millie D. MD, MPH1; Hutfless, Susan PhD2; Kappelman, Michael D. MD, MPH1; Khalili, Hamed MD, MPH3; Kaplan, Gilaad G. MD, MPH4; Bernstein, Charles N. MD5; Colombel, Jean Frederic MD6; Gower-Rousseau, Corinne MD, PhD7; Herrinton, Lisa PhD8; Velayos, Fernando MD, MPH9; Loftus, Edward V. MD10; Nguyen, Geoffrey C. MD, PhD11; Ananthakrishnan, Ashwin N. MD, MPH3; Sonnenberg, Amnon MD, MSc12; Chan, Andrew MD, MPH3; Sandler, Robert S. MD, MPH1; Atreja, Ashish MD, MPH6; Shah, Samir A. MD12; Rothman, Kenneth J. DrPH14,15; Leleiko, Neal S. MD, PhD13; Bright, Renee MS6; Boffetta, Paolo MD6; Myers, Kelly D. BS16; Sands, Bruce E. MD, MS6

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Abstract

This review describes the history of U.S. government funding for surveillance programs in inflammatory bowel diseases (IBD), provides current estimates of the incidence and prevalence of IBD in the United States, and enumerates a number of challenges faced by current and future IBD surveillance programs. A rationale for expanding the focus of IBD surveillance beyond counts of incidence and prevalence, to provide a greater understanding of the burden of IBD, disease etiology, and pathogenesis, is provided. Lessons learned from other countries are summarized, in addition to potential resources that may be used to optimize a new form of IBD surveillance in the United States. A consensus recommendation on the goals and available resources for a new model for disease surveillance are provided. This new model should focus on “surveillance of the burden of disease,” including (1) natural history of disease and (2) outcomes and complications of the disease and/or treatments.

Copyright © 2013 Crohn's & Colitis Foundation of America, Inc.

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