Crohn?s disease (CD) and ulcerative colitis (UC), collectively referred to as inflammatory bowel disease (IBD), are chronic diseases with no cure. The highest prevalence of IBD is in northern Europe and North America. Although the United States is home to people of many different racial and ethnic backgrounds, the incidence, prevalence, and natural history of IBD within these racial and ethnic groups has not been well described. Importantly, emerging data suggests Black patients appear to have a more aggressive disease course than other populations. Coupled with the frequent socioeconomic disparities that face non-White minorities in the United States, these patients may be at extremely high risk for poor outcomes of IBD. In this research, we will: 1) build a registry of patients with incident diagnosis of CD and UC, 2) estimate the incidence and prevalence of CD and UC at a national level using representative data that encompasses populations from all segments of the socioeconomic and geographic distribution of the United States, and 3) determine whether race and IBD practice volume are associated with patterns of care and key outcomes including use of biologics, steroids, narcotics, hospitalization and surgery at a national level and within high volume IBD centers. Within the high volume IBD centers we will also test whether socioeconomic status, frequency of follow-up visits and trust in the healthcare system may confound associations between race, treatment patterns and outcomes. The results of this work will provide nationally representative data on the burden of disease, including among non-White minority populations, overcoming limitations of prior studies and establishing a basis for ongoing IBD surveillance. In addition, this work has the potential to identify targets for interventions to reduce disparities and improve outcomes for high risk patients.

Public Health Relevance

The incidence and prevalence of Crohn?s disease and ulcerative colitis in the United States are high, but precise estimates, particularly in minority populations, are lacking. In the proposed research, we will address this research gap by combining multiple data sets that capture the full breadth of the United States population. We will also create a prospective registry of newly diagnosed patients to study disparities in care, the results of which can help to standardize treatment patterns in ways that allow all patients to have the greatest opportunity to achieve a normal quality of life and prevent complications of their disease.

National Institute of Health (NIH)
National Center for Chronic Disease Prev and Health Promo (NCCDPHP)
Research Project--Cooperative Agreements (U01)
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Special Emphasis Panel (ZDP1)
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Crohn's and Colitis Fdn of America, Inc.
New York
United States
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