Overall Study Question: The purpose of this request is to obtain data from the ICN registry to characterize the very early onset IBD (VEO-IBD) population within the ICN network. VEO IBD will be defined for the purposes of this evaluation as an age at diagnosis of less than 6 years. This data will be used to help describe epidemiology and phenotype of this group of patients in this very large pediatric IBD cohort.

Specific Aims: In brief, we are hoping to compare the following demographic data for VEOIBD cohort and then eventually compare this to patients diagnosed at >6 years of age. Variables of interest would include: Demographic data at registration(ethnicity, race, gender, academic center vs private practice, disease location and phenotype at first visit and at 1 year), including presence of perianal disease, Extraintestinal manifestations at first visit and at 1 year, disease severity at first visit and at 1 year (PGA, PUCAI, sPCDAI), Nutrition/growth status at first visit and at 1 year, surgical intervention at first visit and at 1 year (colectomy, colostomy/ileostomy), therapy (by category – medication and nutrition) at first visit and at all time points in the first year after diagnosis and hospitalizations in the first year after registration.

Study Period: starting in January 2023

Contact: Brendan Boyle and Sabina Ali

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