Challenges in Designing a National Surveillance Program for Inflammatory Bowel Disease in the United States
This review describes the history of US government funding for surveillance programs in IBD, provides current estimates of the incidence and prevalence of inflammatory bowel diseases (IBD) in the United States (US), 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, in order to provide a greater understanding of the burden of IBD, disease etiology and pathogenesis, is provided. Lessons learned from other countries are summarized, as well as potential resources that may be used to optimize a new form of IBD surveillance in the US. A consensus recommendation on the goals and available resources for a new model for disease surveillance are provided. This new model should focus upon "surveillance of the burden of disease," including 1) natural history of disease and 2) outcomes and complications of the disease and/or treatments.