ImproveCareNow (ICN) is a Learning Health Network that enables patients, families, clinicians and researchers to work together to accelerate innovation, discovery and the application of new knowledge.

ICN’s Outcomes registry is a key enabler of new research and innovation for our community. To date, more than 27,000 patients have given their consent for their data to be used for research in support of ICN’s mission to improve outcomes for children and adolescents with IBD.

ImproveCareNow (ICN) is excited to share the findings from a years-long clinical trial COMBINE (Clinical Outcomes of Methotrexate Binary treatment with INfliximab or adalimumab in practice). The aim of this trial was to study if treatment with a single anti-TNF medication (infliximab and adalimumab) or dual therapy that includes methotrexate is more effective in children with moderate to severe Crohn’s disease.   

ImproveCareNow has been integral to this clinical trial from the beginning, including leading a research prioritization project in which the aim of this study was a top priority for members of the ICN community, to voting for the name of the study at the 2015 Community Conference. ICN care centers recruited for participation in this trial were vital to its success.  

Below is an excerpt from an article highlighting the key takeaways of this important trial from Principal Investigator Mike Kappelman, MD, MPH’s care center, University of North Carolina at Chapel Hill.  

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Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.

The ICN Research committee encourages everyone to submit research proposals even if you think the research process might be too intimidating or difficult. Because when we ask and answer questions about IBD together as a community, we can get even better results.

Hi everyone! My name is Ryleigh, I'm 17, and I have Crohn's disease. I'm currently a senior in high school and plan to attend college in the fall. Something that most people don't know about me is that I used to be able to name over one hundred dog breeds when I was little, but I've forgotten a lot of them now.