Perianal fistulas are a common complication of Crohn’s disease in children. At Digestive Diseases Week (DDW) 2016 Dr. Jeremy Adler (@jeremyadlermd) presented research investigating whether low ultraviolet light (UV) exposure is associated with risk of perianal disease in pediatric patients with Crohn’s disease. This research builds on Dr. Adler’s investigation of instances of perianal disease accepted for publication in J Pediatr Gastroenterol Nutr 2016 (in press).


Using data from the ImproveCareNow Registry, Adler’s research team performed a retrospective analysis of more than 10,000 pediatric patients registered in ImproveCareNow between May 2006 and October 2014. The team discovered that 21% of patients developed perianal disease by five years after diagnosis, and that patients with low UV exposure were more likely to develop perianal disease. Other risk factors for the development of perianal disease included older age at onset of IBD, physician global assessment of more active disease at diagnosis and anatomic distribution of disease at diagnosis.  

This novel pediatric IBD research highlights the power of data, carefully collected and curated over time, to help us better understand the nature and outcomes for pediatric Crohn’s disease and ulcerative colitis treatments. Better understanding perianal disease, what causes it, and what risk factors we might have control over will help enable us to continue to improve the care and the health of patients in the near term.

The ImproveCareNow Registry is the largest and fastest growing pediatric IBD registry in the world, with data from over 25,000 patients with IBD as of July 2016. The ImproveCareNow Network currently includes 91 centers across 36 United States and the District of Columbia, England and Qatar. 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.


Author's note: Dr. Adler and colleagues utilized the power of the ImproveCareNow registry to determine risk factors for the development of complicated Crohn's disease.  This study helps demonstrate the power of "Big Data". The ImproveCareNow registry continues to grow and its data is available to investigators to conduct clinical research studies. Applications to utilize the registry are available on the ImproveCareNow website ( and should be submitted for review to the ImproveCareNow Research Committee.

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