PIBDF is excited to share important news about a new international project that has the potential to improve care for children living with inflammatory bowel disease (IBD). We are partnering with the Critical Path Institute (C Path) and leading pediatric IBD centers in Europe and the United States to build the first large-scale registry focused specifically on children with Crohn’s disease and ulcerative colitis.
The CP-DMC aims to accelerate the development of regulatory-grade, quantitative disease progression models through multi-stakeholder collaboration. These models will support clinical development programs by improving clinical trial design, optimizing development strategies, and increasing predictability in pediatric drug development pathways. The pediatric IBD pilot is the first in a series of proof-of-concept efforts designed to build scalable, real-world, and regulator-ready tools across high-need therapeutic areas.
For families and providers, this work aims to bring better answers, better science, and better options.
Pediatric IBD is complex and can affect each child differently. Because the number of children with IBD is smaller than the number of adults, it has been difficult in the past to gather enough information to fully understand long-term outcomes or rare side effects. This can slow the development of new treatments. This new registry will help change that by bringing together information from many countries in one coordinated effort. This will allow experts to:
Ultimately, this means children can benefit from more informed, more personalized, and more timely care.
PIBDF will contribute data from our CREATE registry, which follows children with IBD over time. By combining CREATE data with other major databases from around the world, we can help build the scale needed to answer questions that no single center or country could answer alone. Our participation ensures that the real-life experiences of children and families remain central to this work.
For pediatric gastroenterologists and clinical teams, this international effort will provide:
By building a large and diverse database, the project will help providers offer more precise and evidence-based care.
This collaboration represents one of the most important steps forward in pediatric IBD research in many years. By working together across borders and across organizations, we can accelerate progress toward better treatments, improved quality of life, and more hope for the children and families we serve.
PIBDF is proud to be part of this international effort and will continue to update our community as the project grows.