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Remission rates don’t rise by accident—they rise when people, data, and purpose align. This week we were joined by our friend Becky Johnson Rescola, Executive Director and President of Improve Care Now (ICN), to unpack how a learning health network is transforming pediatric IBD care through shared data, quality improvement, and genuine partnership with families.

We trace ICN’s journey from ten centers in 2007 to a 100+ site network with a registry tracking over 33,000 active kids and young adults. Becky explains how consistent measurement and coaching improved remission rates, with growing emphasis on sustained and steroid‑free remission. You’ll hear a real-time example of change in motion: a shared decision-making tool piloted at eight centers to help families weigh adalimumab plus methotrexate, reflecting registry findings that combo therapy speeds remission with adalimumab but not infliximab. We also dig into how registry data supports off‑label insights, helps sponsors understand pediatric outcomes, and even flags potential trial participants through privacy‑preserving queries.

Beyond medications, we explore EMR integration with Epic to reduce data burden, targeted efforts to close gaps in race and ethnicity fields to spot disparities, and the network’s commitment to co‑producing resources with patients and parents. Becky brings the community to life through ICN’s conferences—scholarships, learning labs, and a welcoming vibe that empowers quieter voices to speak up and help set the agenda. From very early onset IBD and tailored transition to adult care, to smarter partnerships across GI and related conditions, the path forward is both practical and ambitious: make evidence usable, make participation easy, and make sure every child benefits whether or not they’re seen at an ICN center.

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Links

• Improve Care Now's website
• ICN- Tools and resources for patients and parents

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