TY - JOUR
T1 - Challenges in designing a national surveillance program for inflammatory bowel disease in the United States
AU - Long, Millie D.
AU - Hutfless, Susan
AU - Kappelman, Michael D.
AU - Khalili, Hamed
AU - Kaplan, Gilaad G.
AU - Bernstein, Charles N.
AU - Frederic Colombel, Jean
AU - Gower-Rousseau, Corinne
AU - Herrinton, Lisa
AU - Velayos, Fernando
AU - Loftus, Edward V.
AU - Nguyen, Geoffrey C.
AU - Ananthakrishnan, Ashwin N.
AU - Sonnenberg, Amnon
AU - Chan, Andrew
AU - Sandler, Robert S.
AU - Atreja, Ashish
AU - Shah, Samir A.
AU - Rothman, Kenneth J.
AU - Leleiko, Neal S.
AU - Bright, Renee
AU - Boffetta, Paolo
AU - Myers, Kelly D.
AU - Sands, Bruce E.
PY - 2014/2
Y1 - 2014/2
N2 - 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.
AB - 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.
KW - Clinical areas
KW - Epidemiology
KW - Outcomes research/measurements
UR - https://www.scopus.com/pages/publications/84893760695
U2 - 10.1097/01.MIB.0000435441.30107.8b
DO - 10.1097/01.MIB.0000435441.30107.8b
M3 - Review article
C2 - 24280882
AN - SCOPUS:84893760695
SN - 1078-0998
VL - 20
SP - 398
EP - 415
JO - Inflammatory Bowel Diseases
JF - Inflammatory Bowel Diseases
IS - 2
ER -