IBD Etiology and Outcomes (CDC-Funded Program, 2018-2024)

Key points

  • In 2018, CDC funded a cooperative agreement, Etiology and Outcome of Inflammatory Bowel Disease (IBD).
  • The Crohn's and Colitis Foundation of America was awarded funding from October 2018-September 2024.

Overview

Cooperative agreement (2018-2024)

CDC funded a cooperative agreement in 2018, Etiology and Outcome of Inflammatory Bowel Disease (IBD).

It aims to use IBD disease registries to study disease affects, look at differences based on race and ethnicity, and find ways to improve outcomes.

Recipient

The Crohn's and Colitis Foundation of America was awarded funding to conduct research.

They called their research the INPUT study (INcidence, Prevalence, Treatment, and OUTcomes in Patients with IBD).

They will continue to analyze data and disseminate scientific results until the end of the funding period in the fall of 2024.

Goals

The research goals of this study are to:

1. Estimate the incidence and prevalence of Crohn's disease and ulcerative colitis in the United States, and across different racial/ethnic groups.

2. Partner with existing pediatric and adult IBD registries, including supplementing data with additional surveys.

  • Use these and insurance claims data to identify if patterns of care and outcomes are linked to other factors, such as patient race, IBD practice volume, and social factors (like health literacy and distrust of the health care system).

Milestones

Highlights of research progress

Enhance existing IBD registries for the adult and pediatric populations.

• Partner with two existing research registries to describe the natural history of IBD.

• Supplement the registries with surveys to learn race, ethnicity, time to diagnosis, and social factors.

Determine differences in the racial/ethnic burden of IBD.

• Create, validate, and apply an algorithm to identify existing and newly diagnosed IBD patients in administrative claims data sets.

• Estimate national incidence and prevalence of Crohn's disease and ulcerative colitis among different racial/ethnic groups.

Identify evidence-based strategies to improve disease outcomes.

• Determine if race/ethnicity is associated with delays in IBD diagnosis, distrust of the health care system, and health literacy.

Accomplishments

The recipient has published and shared results with partners and professionals in the field, as well as through peer-reviewed outlets.

  • Five abstracts presented in scientific journals and conferences.
  • Presentations given to professional associations and internal partners.

Manuscripts published in scientific journals

1. Incidence, Prevalence, and Racial and Ethnic Distribution of Inflammatory Bowel Disease in the United States.1 Or read more about this study on the Crohn's and Colitis Foundation News page.

2. Development and Validation of Claims-Based Definitions to Identify Incident and Prevalent Inflammatory Bowel Disease in Administrative Healthcare Databases.2

Contacts

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Content Source:
National Center for Chronic Disease Prevention and Health Promotion
  1. Lewis JD, Parlett LE, Jonsson Funk ML, et al. Incidence, prevalence, and racial and ethnic distribution of inflammatory bowel disease in the United States. Gastroenterology. 2023;165(5):1197–1205.e2. doi:10.1053/j.gastro.2023.07.003
  2. Dawwas GK, Weiss A, Constant BD, et al. Development and validation of claims-based definitions to identify incident and prevalent inflammatory bowel disease in administrative health care databases. Inflamm Bowel Dis. 2023;29(12):1993-1996. doi:10.1093/ibd/izad053
  • Lewis JD, Brensinger C, Parlett LE, et al. More than 2.6 million cases of provider-diagnosed inflammatory bowel disease in the United States (Abstract Sa1570). In: Gastroenterology. Vol 162. AGA Institute; 2022:S-419. doi:10.1016/S0016-5085(22)60997-1
  • Linville T, Waduge E, Adler J, et al. African American race is associated with lower health literacy among caregivers of children with inflammatory bowel disease (Abstract 237). In: North American Society For Pediatric Gastroenterology, Hepatology & Nutrition. 2021:s162-s163. doi:10.1097/MPG.0000000000003327
  • Dawwas GK, Haynes K, Parlett L, et al. Impact of extending the lookback period on the estimated prevalence of inflammatory bowel disease in administrative claims data (Abstract 5099). In: Pharmacoepidemiology and Drug Safety. Vol 29. ; 2020:3-634. doi:10.1002/pds.5114
  • Mcloughlin J, Linville T, Jester T et al. Distance to treating center, but not race or ethnicity, is associated with diagnostic delay in pediatric inflammatory bowel disease. DDW May, 2023
  • Mcloughlin J, Linville T, Jester T et al. Distance to treating center, but not race or ethnicity, is associated with diagnostic delay in pediatric inflammatory bowel disease. Pediatric Academic Society, April 2023