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Commentaries on “Workshop Report: Developing a Pediatric Inflammatory Bowel Diseases Network and Data Platform in Canada”PEDIATRIC INFLAMMATORY BOWEL DISEASE NETWORKS RAISING THE BAR

Rosen, Michael J.*; Denson, Lee A.; Kugathasan, Subra

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Journal of Pediatric Gastroenterology and Nutrition: August 2012 - Volume 55 - Issue 2 - p 121-122
doi: 10.1097/MPG.0b013e3182605070
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Pediatric IBD studies have improved in quality and quantity because of multicenter collaborations rather than single-center reports. Carefully planned prospective cohort studies with biological materials are needed to translate new discoveries into clinical practice. In 2005, the Crohn's & Colitis Foundation of America (CCFA) established priorities in pediatric IBD science (1) and created a pediatric network with solid infrastructure, including financial sustainability, geographic diversity, and freedom from commercial bias, to undertake clinical trials, quality improvement projects, and translational research. This network has 43 centers across North America and has approximately 2000 newly diagnosed children with IBD enrolled in a translational research project. DNA, sera, stool, and intestinal biopsies taken at the time of diagnosis are banked, allowing eventual analyses for biomarkers and of “causal” models linking exposure to disease risk, disease progression, and risk stratification; however, the CCFA Pediatric Network remains a convenience cohort, prone to selection bias, and lacking the denominator data of a population-based cohort. A cohort that captures every single new diagnosis of IBD would be unique among existing IBD cohorts.

A Canadian group is proposing the initiation of an exclusive pediatric IBD network and data platform that would accomplish this goal (2). The potential success of such a network centers around 2 unique strengths of Canadian pediatric IBD care: the vast majority of children with IBD in Canada are cared for by a relatively small number of centers, facilitating their chance to capture almost all of the pediatric patients with IBD in Canada; and the capability of linking with information-rich government administrative databases associated with the all-encompassing Canadian universal health care system.

A few aspects of the proposed Canadian network will require further clarification. The goals for the network identified at this meeting remain broad. The investigators acknowledge that initial composition of infrastructure such as data platforms and biorepositories will need to be dictated by clear objectives. The design phase of the data management platform will inform the ability for data sharing within the existing network and enable future collaborative ancillary studies, which will capitalize on the increased power of a combined cohort.

Mechanisms to support enrollment will need to be identified because the authors state that reimbursement for data collectors and study coordinators is unlikely in Canada. Enrolling patients and capturing follow-up visits in such a network, with careful attention to input of accurate data, requires a substantial amount of people power. Smaller centers will be challenged to participate without financial support for data collection. This could undermine the major strength of a true population-based cohort. For the CCFA Pediatric Network, the per-enrolled patient reimbursement structure is a key reason that enrollment rates have consistently exceeded expectations.

A Canadian pediatric IBD research network will be a welcome addition and will complement existing networks. Successful implementation of a Canadian network will ensure a population-based IBD prospective cohort, routinely allowing the collection of several biological samples at different time points and facilitating the investigation of fundamental questions of disease pathogenesis and clinical course.


1. Bousvaros A, Sylvester F, Kugathasan S, et al. Challenges in pediatric inflammatory bowel disease. Inflamm Bowel Dis 2006; 12:885–913.
2. Sherman PM, Brown S, Rose K, et al. Workshop report: developing a pediatric inflammatory bowel diseases network and data platform in Canada. J Pediatr Gastroenterol Nutr 2012;55:125–30.
© 2012 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,