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Inflamm Bowel Dis. 2014 Feb;20(2):398-415. doi: 10.1097/01.MIB.0000435441.30107.8b.

Challenges in designing a national surveillance program for inflammatory bowel disease in the United States.

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  • 11Division of Gastroenterology and Hepatology, Departments of Medicine and Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina; 2Johns Hopkins University School of Medicine, Baltimore, Maryland; 3Center for Crohn's and Colitis, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts; 4Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Calgary, Alberta, Canada; 5Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada; 6Icahn School of Medicine at Mount Sinai, New York, New York; 7Epimad Registry, Epidemiology Unit, Hospital and University Lille Nord de France, Lille, France; 8Kaiser Permanente Northern California, Oakland, California; 9UCSF Center for Colitis and Crohn's Disease, University of California, San Francisco, San Francisco, California; 10Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota; 11Mount Sinai Hospital Centre for Inflammatory Bowel Disease, University of Toronto, Toronto, Canada; 12Portland VA Medical Center, Portland, Oregon; 13Alpert Medical School of Brown University, Providence, Rhode Island; 14RTI Health Solutions, Research Triangle Institute, Research Triangle Park, North Carolina; 15Department of Epidemiology, Boston University School of Public Health, Boston, Massachusetts; and 16QForma, Inc., Santa Fe, New Mexico.


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.

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