PRO-KIIDS Archived Studies

NEOPICS - Defining Very Early Onset IBD

PI: Aleixo Muise, MD & Michael Kappelman, MD

The Defining Very Early Onset Inflammatory Bowel Disease (VEOIBD) study is a multi-center, retrospective cohort project that seeks to characterize the clinical features and natural history of young children who develop VEOIBD under the age of 6 years. 

Earlier studies confirm that children diagnpsed with IBD at these young ages develop disease that is significantly different- and may be more severe- than the form of IBD presenting in older chilfren and adgults. However, until this research, there were no systematic studies in VEOIBD that rigorously described the clinical features, treatments and short and long-term outcomes in this population. 

Our study works to address this knowledge gap by describing:

1. Clinical and phenotypic characteristics of VEOIBD at presentation, including: intestinal and extra-intestinal symptoms, anthropometric measurements, laboratory values, endoscopic, histologic, and radiographic features, and disease type, extent, phenotype, and behavior;

2. The use and outcomes of medical and surgical therapies among patients with VEOIBD; and

3. The natural history of VEOIBD, including: diagnostic reclassification, need and indications for surgery, hospitalization, growth and development, mortality, steroid dependency, and evolution in disease extent, behavior, and activity.

To achieve these goals, we leveraged the robust pediatric IBD and VEOIBD research networks of PRO-KIIDS and NEOPICS (, an international network of pediatric gastroenterologists and academic scientists investigating VEOIBD). Interested PRO-KIIDS members were invited to submit an application, and participating sites were selected based on their demonstrated ability to identify and obtain records for all cases of VEOIBD diagnosed at their practices to minimize selection bias. A final network of 25 leading pediatric IBD centres across the USA and Canada were selected with local ethics approval documented.

VEOIBD now comprises a substantial cohort of IBD patients: approximately 15% of pediatric IBD patients, with an estimated incidence of 4.37 per 100,000 children and prevalence of 14 per 100,000 children. Considering the incidence and prevalence of VEOIBD is rapidly increasing, the potential significance of these findings to the academic community and to VEOIBD patients may be invaluable.

Indeed, a better understanding of the natural history of VEOIBD, and how it differs from older onset IBD, may be able to help both current and future patients diagnosed with VEOIBD. This additional information may allow faster recognition and diagnosis, and could also lead to more tailored treatment algorithms for improved response. We anticipate this study – and future studies arising from it—will provide much needed insight into VEOIBD, which may lead to more personalized care and potentially improved outcomes for these youngest IBD patients.