ImproveCareNow Registry (ICN2) Used to Characterize Extent of Disease at Presentation of Ulcerative Colitis

The variation in presentation of ulcerative colitis (UC) during childhood has been incompletely characterized. In October, at the NASPGHAN Annual Meeting, Dr. Jeremy Adler (@jeremyadlermd) presented an abstract on behalf of ImproveCareNow, which highlights the characterization of the extent of disease at presentation of UC in a large cohort of pediatric patients using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).

Using data from ICN2, the research team conducted a retrospective analysis which resulted in the discovery that pancolitis, which describes ulcerative colitis that involves the entire large intestine from the cecum to rectum, is the predominant distribution of ulcerative colitis regardless of age presentation. This observation is contrary to earlier research, which suggests the younger a child is at time of UC diagnosis, the more likely to have pancolitis. And the older the child, the more likely to have only part of the colon involved. This finding suggests a reconsideration of prior assumptions about the behavior of ulcerative colitis in the pediatric age range.

This novel pediatric IBD research highlights the power of data, carefully collected and curated over time, to answer questions about complex conditions such as Crohn’s disease and ulcerative colitis and to shine light on ways we can work together to more completely understand IBD and work to improve the care and the health of patients in the near term.

ICN2 is the largest and fastest growing pediatric IBD registry in the world, with data from over 22,000 patients with IBD and 130,000 visits as of October 2015. The ImproveCareNow Network currently includes 83 participating pediatric IBD centers in 36 states and the District of Columbia and two in England, with nearly 50% of Crohn’s disease and ulcerative colitis patients cared for by US pediatric gastroenterologists. The purpose of ImproveCareNow is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. Data in the ImproveCareNow registry is used for improvement, research and innovation.