How Research Is Changing the Future of Crohn’s Disease Care for Children

Torn pieces of paper with the words "Crohn's Disease"

For decades, treating Crohn’s disease in children has gone like this: patients would try a medication, wait months to see if it worked, and then change course if it didn’t.

The medical community is working to change that approach — thanks to pediatric research designed to:

  1. understand why Crohn’s disease behaves differently from child to child and;
  2. how treatment can be personalized from the very beginning.

At the center of this progress is CAMEO: Clinical Imaging and Endoscopic Outcomes in Children Newly Diagnosed with Crohn’s Disease, a large national research effort funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) within the NIH.  CAMEO is focused on children newly diagnosed with moderate to severe Crohn’s disease — and it’s helping redefine what successful treatment looks like. 
 

Why pediatric Crohn’s research matters

Crohn’s disease is a chronic (lifelong) inflammatory condition of the digestive tract, and while it affects people of all ages, about 20% of patients are diagnosed before age 20, most often during the pre-teen and teen years.

In children, Crohn’s disease can affect their health and well-being:

  • Ongoing inflammation can interfere with growth and development
  • Poor nutrition either from inadequate intake or impaired absorption can affect energy, school performance, and puberty
  • Delayed or poor control of disease can lead to long-term complications

That’s why pediatric-focused research is critical.

“Children need specialized care for chronic conditions,” explains Jeffrey Hyams, MD, Division Head of Pediatric Gastroenterology, Principal Investigator and clinical lead of the CAMEO® study. “Their disease behaves differently, and their treatment needs are different.”
 

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Research and care are deeply connected. The treatments we rely on today exist because families before us participated in research.

Jeffrey Hyams, MD, Division Head, Gastroenterology | Director, The Inflammatory Bowel Disease Center | Director, The Infusion Center | The Mandell-Braunstein Family Endowed Chair for Inflammatory Bowel Disease,
Connecticut Children's

Moving beyond trial-and-error treatment

One of the biggest challenges in Crohn’s disease care has been the unpredictable nature of the disease. Some children respond extremely well to certain biologic medications such as REMICADE® or Humira®, which are considered the gold standard of care, while others do not. Until recently, there was no reliable way to know which child would benefit most from this type of biologic therapy. 

The current research effort is designed to change that.

By studying children right when they’re diagnosed, before treatment begins, researchers are examining:

  • How the immune system is behaving
  • Genetic factors linked to inflammation
  • The balance of bacteria in the gut (the microbiome)
  • Early standardized imaging and endoscopic findings

The goal is to catch patterns that can predict treatment response — and ultimately guide doctors toward the most effective therapy sooner.

“This is precision medicine,” says Dr. Hyams. “If we can predict what will work before starting treatment, we can avoid wasting time and help kids heal faster.”
 

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Redefining success: healing, not just symptom relief

Up until now, success in Crohn’s disease has been measured by improvement in symptoms. Today, we aim to drive the standard is higher.

“Our goal isn’t just for kids to feel better,” Dr. Hyams explains. “It’s for their intestines to actually heal.”

True healing means:

  • Reduced inflammation seen on imaging and colonoscopy
  • Improved nutrient absorption
  • Normal growth and development
  • Lower risk of future complications

Achieving this level of healing early can have a lifelong impact on a child’s health.

How research directly improves patient care

Participation in research does not replace or delay the care kids with Crohn’s need right away — it enhances it. Children in these studies continue to receive care 100% dedicated to kids from their clinical team, with close monitoring and follow-ups from their research team.

Families who choose to participate help researchers answer critical questions that can improve care for future patients.

“Research and care are deeply connected,” says Dr. Hyams. “The treatments we rely on today exist because families before us participated in research.”

One teenage boy, age 16, who participated in the study, was willing to allow the research staff to follow his course during the first year of treatment. He also consented to the use of biospecimens obtained during routine care (blood, stool, and minute pieces of tissue obtained at colonoscopy) to help explain what was happening at a tissue level.  

 

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Hope for families facing a Crohn’s diagnosis

A Crohn’s diagnosis can feel overwhelming, but the outlook for children today is far more hopeful than it was even 20 years ago.

“With today’s therapies and monitoring, most kids do remarkably well,” Dr. Hyams says. “By maximizing the effectiveness of our therapies we improve quality of life and hopefully avoid long term complications such as hospitalizations or surgery.”

Ongoing research such as CAMEO, continues to expand treatment options and refine how care is delivered — bringing pediatric medicine closer to a future where treatment is personalized, proactive, and more effective from the start.
 

Research today, better care tomorrow


Every advancement in Crohn’s disease care begins with a question — and families willing to help answer it.

 “We’re partners with our families,” says Dr. Hyams. “We’re learning together, and we’re improving care together.”

Through innovation, collaboration, and research-driven care, the future for children with Crohn’s disease continues to grow brighter.