Wednesday, June 18, 2014

A Pediatric Learning Health System & the Search for an Effective IBD Treatment

By: Lewis First, MD, MS

TNF α, (Public Domain)
Children with inflammatory bowel disease (IBD) are commonly seen by both primary care providers and gastrointestinal specialists but never with high enough numbers to really know if a specific approach to IBD is better than others—that is until the arrival of ImproveCareNow (ICN), a network of practices linked together as a pediatric learning health system, which allows standardized data-gathering across sites at multiple children’s hospitals in real time to best determine methods to improve the quality of outcomes in these chronically ill children, teens, and young adults.

This week, Forrest et al. (doi: 10.1542/peds.2013-4103) share with us the result of how the ICN network can be used for high-quality clinical research by looking at data across 35 pediatric gastrointestinal practices as a sequence of non-randomized trials. The study question was whether anti-TNFα therapy was effective at achieving clinical and steroid-free remission rates when compared to children not getting this treatment. The results involve more than 1,800 of 4,130 patients with Crohn’s disease getting this therapy who were then compared to those not receiving TNFα. The results will bowel (I mean bowl) you over and herald this type of network as a valuable research tool for improvement.

To help further highlight the value of learning health systems like ICN, read the accompanying commentary by Abernethy (doi: 10.1542/peds.2014-1182), which further explores the what learning health systems are, how they are put into practice (or not) and the kinds of research opportunities they present.

Both study and commentary will make your helping families with inflammatory bowel disease far less painful than you might imagine dealing with this illness might be, so read on and learn more!

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