ImproveCareNow Research


ICN Research Explained: Symptom Cluster Profiles in Adolescents with Inflammatory Bowel Disease: Cross-Sectional Study Using ImproveCareNow Data

Sleep disturbance, pain, anxiety, depression, and fatigue are prevalent in adolescents and young adults with inflammatory bowel disease (IBD). These symptoms often present in co-occurring sets, known as symptom clusters. We aimed to identify distinct symptom clusters and factors associated with symptom profiles in adolescents with IBD.


ImproveCareNow Study Contributes to the Totality of Evidence of New Biologic Approved for Pediatric Crohn’s Patients Over the Age of Two

Johnson & Johnson recently announced the Federal Drug Administration’s (FDA) approval of STELARA® (ustekinumab) for pediatric Crohn’s disease. This approval offers patients over the age of two with moderately to severely active Crohn’s disease more treatment options and better access to effective therapies. Ustekinumab is the first non-TNF biologic to treat both adult and pediatric patients with Crohn’s disease two years and older.

After more than a decade since the last major therapeutic approval in 2014, the regulatory approval of ustekinumab for pediatric Crohn’s disease marks more than scientific progress—it represents renewed hope, expanded choice, and a long-overdue commitment to children living with chronic inflammatory bowel diseases. By expanding our arsenal, we are taking a major step forward in improving outcomes and quality of life for children facing this challenging condition.

– Shehzad Saeed, MD, FAAP, AGAF, Clinical Director, ImproveCareNow 


ImproveCareNow Research Demonstrates Effectiveness and Safety of Real-World Data in Pediatric IBD Patients through the REALITI Study

ImproveCareNow (ICN) is excited to share that findings from a years-long observational study, Effectiveness and safety of ustekinumab in pediatric Crohn's disease: Results of the REALITI study are now published in the March 2026 issue of the Journal of Pediatric Gastroenterology and Nutrition. The study aimed to assess the effectiveness and safety of ustekinumab in real-world clinical settings for children with Crohn’s disease, and showed that the effectiveness and safety of ustekinumab treatment were similar in pediatric patients and young adult patients. You can read more about these findings here.


Learning How Engagement Impacts IBD Outcomes With The CLARE Study

If you are a young person living with Crohn’s disease or ulcerative colitis, or a parent/caregiver supporting one, you know that the reality is that managing a chronic health condition is complex. On any given day, you might be juggling appointments, managing symptoms, remembering medications, and finding the right tools to stay on track.

Have you ever wondered if the apps, resources, and community support you use actually make a measurable difference in your ability to manage your health? The CLARE Study (Community Learning About Results of Engagement) is on a mission to find out—and we need your voice to do it.


ICN Research Explained: Perspectives on Contraception, Pregnancy, and Reproductive Health Counseling from Young Women With Inflammatory Bowel Disease

Little is known about how young women with IBD make decisions about reproductive health topics, including birth control, pregnancy, and period symptoms, and about how they prefer to learn about these topics.


ICN Research Explained: Travel Time to Treating Center is Associated with Diagnostic Delay in Pediatric Inflammatory Bowel Disease

Delayed diagnosis of inflammatory bowel disease (IBD) leads to prolonged symptoms and worse long-term outcomes. We sought to evaluate whether race, ethnicity, disease type, and social factors are associated with delayed diagnosis of pediatric IBD.


ICN Research Explained: The association between erythema nodosum and pyoderma gangrenosum and pediatric inflammatory bowel disease

The objectives of this study are to estimate rates and identify factors associated with erythema nodosum (EN) and pyoderma gangrenosum (PG) in pediatric patients with inflammatory bowel disease (IBD).


ICN Research Explained: High body mass index and response to anti-tumor necrosis factor therapy in pediatric Crohn’s disease

Obesity is common among patients with pediatric Crohn's disease (PCD). Some adult studies suggest obese patients respond less well to anti-tumor necrosis factor (TNF) treatment. This study compares anti-TNF response and anti-TNF levels between pediatric patients with normal and high body mass index (BMI).


Trends in ICN and IBD Research - Notes from the Field

ImproveCareNow Research Committee member and pediatric IBD psychologist, Jennie David PhD, recently shared her answers to some questions about the state of IBD research, emerging trends in ICN Research, significant recent discoveries, and the value of being involved for psychosocial professionals.


ICN Research Explained: Diagnosis change in pediatric inflammatory bowel disease

This study aims to characterize pediatric inflammatory bowel disease (IBD) patients who change diagnosis and describe the characteristics of that change.


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