Putting Kids First—How the Foundation Is Advancing Pediatric IBD Care and Treatment

By: Alan Moss, M.D., Chief Scientific Officer, Crohn’s & Colitis Foundation, and Marla C Dubinsky, M.D., Chief of the Division of Pediatric Gastroenterology at the Mount Sinai Kravis Children's Hospital; Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai New York 

Closing the Treatment Gap for Pediatric Crohn’s Disease and Ulcerative Colitis  

Rates of Crohn’s disease and ulcerative colitis are rising, particularly among children and young adults. Yet as more children are diagnosed with inflammatory bowel disease (IBD), they continue to face significant gaps in treatment.  

Children have unique medical and developmental needs, but regulatory requirements and the challenges of funding and conducting pediatric clinical trials can delay access to new therapies that are already available to adults. 

The Crohn’s & Colitis Foundation is working to close this gap. By investing in pediatric IBD research, advancing clinical trials, and supporting children and families in their daily lives, the Foundation is helping advance pediatric care. 

Progress happens when science, clinical care, and family support come together, creating a path toward better and brighter futures for every child.

Why Do Children with IBD Need Specialized Care? 

Children with IBD are more than small adults. Their bodies are still growing, their immune systems are developing, and the disease can affect their nutrition, growth, puberty, learning, and mental health. Caring for pediatric IBD means looking beyond symptom control to help children reach important milestones and enjoy childhood. 

The good news is that pediatric IBD care is evolving. Rather than intervening once complications have already occurred, researchers and clinicians are working to identify which children are at greatest risk earlier in their disease journey. The right treatment at the right time can help change a child's future by reducing complications and improving long-term outcomes. 

How Is Research Changing Pediatric IBD Care? 

The Foundation has long been a leader in pediatric IBD research, investing in studies that are helping transform how children are diagnosed, treated, and monitored.  

Pediatric RISK, CAPTURE IBD, and Better Clinical Trials 

One of the Foundation's most significant investments is the Pediatric RISK Stratification Study, the largest new-onset pediatric Crohn's disease study ever completed. Over 13 years, researchers followed 1,800 children across 28 medical centers to better understand how the disease progresses in young patients. The study found that starting biologic therapy close to the time of diagnosis significantly reduced the risk of serious complications leading to surgery, and it identified biomarkers that may help predict which children are most likely to develop these complications. These discoveries are helping shift pediatric IBD care from reacting to complications to prevention by identifying risk earlier, leading to improved long-term outcomes and optimized quality of life. 

Building on that momentum, the Foundation launched CAPTURE IBD, a nationwide study designed to advance precision medicine for children and young adults with IBD. By collecting health information and biosamples during routine care and integrating them into the Foundation's IBD Plexus® research database, researchers can better understand how IBD develops, why treatments work differently from one child to another, and how to personalize care in the future.  

In addition to supporting new research, the Foundation has partnered with the Critical Path Institute and ImproveCareNow to accelerate approval of new treatments for children with IBD. The Foundation also supports initiatives that advance ideas for new therapies for children with IBD. 

Together, these efforts are creating pediatric treatments that are safer, more effective, and designed specifically for children. 

How Does the Foundation Support Children and Families? 

Research is only one part of the pediatric IBD journey. Supporting a child with IBD means caring for more than the disease. Families need trusted information, community, and resources that help children build confidence while navigating everyday life. 

Camp Oasis, School Resources, and Family Resources 

For many children, the Foundation’s Camp Oasis is more than summer camp—it's a place where they can meet other kids who understand what it's like to live with IBD, gain independence, and simply be kids. 

The Foundation also offers educational resources for every stage of childhood, including the IBD & Me Activity Book, guidance for teens with IBD, and the IBD & Me Activity Center. 

Because IBD doesn't stay home when children go to school, the Foundation offers guidance on 504 plans and school accommodations, helping families advocate for bathroom access, testing flexibility, and attendance support when symptoms flare. The Foundation also has educational, pediatric-focused webinars for caregivers within the MyIBD learning on-demand library. 

What Could the Future of Pediatric IBD Care Look Like? 

Looking ahead, we asked each other what gives us the most hope for the future of pediatric IBD care. For Dr. Marla Dubinsky, that future is informed by the remarkable changes she has witnessed throughout her career: 

“When I began my career in pediatric gastroenterology, we had far fewer treatment options for children with IBD, and too often our approach was reactive, responding to complications rather than having the tools to change the trajectory of disease. Today, the landscape is remarkably different. Advances in therapeutics, biomarkers, imaging, genetics, and our understanding of disease biology are allowing us to diagnose earlier, treat more effectively, and increasingly think about predicting and ultimately preventing disease progression.  

What gives me the greatest hope, however, is the next generation of pediatric IBD clinicians and investigators. They are entering a field where the questions we once thought were impossible to answer are becoming addressable. Continued investment in pediatric research, education, mentorship, and collaboration is essential—not only to ensure that children benefit from scientific advances as quickly as adults, but to give the next generation the tools to take us where we have not yet been: toward truly personalized care, disease interception, and ultimately prevention and cure.” 

Every child with IBD deserves effective treatment, trusted support, and the freedom to keep learning, growing, and being a kid. 

Explore Resources for Kids and Families 

Alan Moss, M.D., Chief Scientific Officer, Crohn’s & Colitis Foundation

Marla C Dubinsky, M.D., Chief of the Division of Pediatric Gastroenterology at the Mount Sinai Kravis Children's Hospital; Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai New York