Kappelman Leads Landmark Study Revealing That 100,000 American Youth Are Living with Inflammatory Bowel Disease

A groundbreaking study published today in Gastroenterology provides the most comprehensive assessment to date of pediatric inflammatory bowel disease (IBD) prevalence in the United States. Funded by the Centers for Disease Control and Prevention (CDC), the research led by Michael D. Kappelman, MD, MPH, professor of pediatrics and epidemiology at the UNC School of Medicine, investigators from the Crohn’s & Colitis Foundation, and researchers at the University of Pennsylvania estimates that more than 100,000 American youth under the age of 20 live with IBD. The study illustrates that the prevalence of pediatric IBD in the U.S. continues to increase and is among the highest worldwide.

This landmark study analyzed data from two commercial insurance claims datasets (Optum’s Clinformatics® Data Mart database and Carelon Research’s Healthcare Integrated Research Database) and Medicaid data from five states (Florida, New York, Pennsylvania, Ohio, and California), providing a nationally representative picture of physician-diagnosed pediatric IBD across the country. The researchers utilized a validated combination of medical diagnoses and prescription medications to identify IBD cases, and calculated age, sex, and race-specific estimates of IBD prevalence. These estimates were then standardized to the 2020 United States Census to generate national prevalence estimates. The study found an increase of about 22% for Crohn’s disease and 29% for ulcerative colitis in the pediatric population compared to 2009 prevalence data.

“Our findings reveal that pediatric IBD affects a significant number of American youth, with prevalence rates among the highest reported worldwide,” said Kappelman, who is also a member of the UNC Children’s Research Institute. “This study provides crucial data to inform healthcare policy, resource allocation, and future research priorities in pediatric IBD.”

Along with Dr. Kappelman, the paper was authored by Colleen Brensinger, MS, University of Pennsylvania; Lauren E. Parlett, PhD, Carelon Research; Andrés Hurtado-Lorenzo, PhD, Crohn’s & Colitis Foundation; and James D. Lewis, MD, University of Pennsylvania.

Key findings from the study include an estimated 100,429 American youth under the age of 20 are living with IBD, which includes Crohn’s disease and ulcerative colitis.The prevalence of Crohn’s disease (71 per 100,000) is higher than ulcerative colitis (44  per 100,000) in the pediatric population. Significant variations in prevalence were observed across racial and ethnic groups, with the highest rates among white youth and in the Northeast. More research is needed to understand the reasons for the racial-ethnic differences in IBD prevalence. The Crohn’s & Colitis Foundation and others are conducting additional research to gather this type of evidence-based information, which will be the topic of future manuscripts.

“This comprehensive evaluation of pediatric IBD prevalence in the U.S. is an important step in understanding the full spectrum of the disease in our youth,” said Andrés Hurtado-Lorenzo, PhD, Senior Vice President of Translational Research and IBD Ventures at the Crohn’s & Colitis Foundation and study co-author. “These data are essential for healthcare professionals and policymakers to effectively manage pediatric IBD, make informed public health decisions, and ultimately improve outcomes for affected children and adolescents.”

The study authors note that while this research provides valuable insights, further investigation is needed to understand the reasons behind the observed demographic and geographic variations in pediatric IBD prevalence.

The research was funded by the Centers for Disease Control and Prevention (CDC) through grant U01-DP006369 granted to the Crohn’s & Colitis Foundation, and the National Institutes of Health through grants P30-DK050306 and P30-DK034987. The DOI is: 10.1053/j.gastro.2024.11.004

The Crohn’s & Colitis Foundation is the leading nonprofit organization focused on both research and patient support for inflammatory bowel disease (IBD), with the mission of curing Crohn’s disease and ulcerative colitis and improving quality of life for the millions of Americans living with IBD. The Foundation’s work is dramatically accelerating the research process, while also providing extensive educational and support resources for patients and their families, medical professionals, and the public. For more information, visit crohnscolitisfoundation.org, call 888-694-8872, or email [email protected].

Carelon Research is the trusted partner for healthcare research. As a subsidiary of Elevance Health, one of the nation’s largest health insurers, we work with life sciences companies, government agencies, and academic research leaders to solve healthcare challenges with a powerful combination of expertise, data, and relationships. As we uncover and apply insights to drugs, devices, and programs, together we make healthcare work for patients.

UNC Health is a state entity and an affiliated enterprise of the University of North Carolina system, comprised of nearly 20 hospitals and more than 900 clinics along with the clinical patient care programs of the UNC School of Medicine (SOM). It exists to improve the health and well-being of North Carolinians and others we serve and to further the teaching mission of the University of North Carolina SOM. UNC Health provided more than $800 million in Uncompensated Charity Care during the past five years. Our hospitals have received numerous awards and recognition for quality care, patient safety, and the overall patient experience.