As part of a multi-center consortium, Emory University pediatric researchers have created the largest shared patient registry of children suffering from inflammatory bowel disease (IBD) reported to date. The IBD registry and associated study will help doctors understand the characteristics of IBD in children of all age groups, particularly very young patients, and improve treatment for children suffering from IBD.
To build the registry, Emory researchers joined others involved in the National Pediatric IBD Consortium, to collect uniform data from January 2000 to November 2003 from a cohort of 1370 young IBD patients. The results, published in an article in the January issue of the Journal of Pediatrics, show that 54 percent of IBD patients were male and 86 percent were white. The largest percentage of IBD diagnosis (48 percent) was made in children ages six to 12, and more than 63 percent of children younger than eight had isolated colonic disease -- a disease limited to the large bowel or colon. Researchers also found that 29 percent of everyone in the registry had at least one family member with IBD.
The results also show that the age diagnosis of IBD can be younger than previously believed, notes Dr. Benjamin D. Gold, MD, director of the Division of Pediatric Gastroenterology and Nutrition, Emory University School of Medicine. The study has the largest cohort of children under the age of two ever reported, the youngest patient at diagnosis being six months of age.
"This is the largest registry of children with inflammatory bowel disease reported in the world. It's even larger than most, if not all, adult registries," says Dr. Gold. "The exciting aspect of this registry and the data it provides is that the more we understand about diagnosing IBD in young children, the earlier parents and doctors can treat this painful disease."
Dr. Gold attributes the large number of patients entered from the Atlanta sites to Emory's collaboration with Children's Healthcare of Atlanta and the private practice community through the Children's Center for Digestive Healthcare, where Stanley Cohen, MD, an adjunct professor of pediatrics at Emory, served as a co-principal investigator.
"Many of the fundamental questions about IBD regarding age of presentation, disease phenotype, epidemiology and risk factors for acquisition can only be answered with large multi-center collaborations," Dr. Gold says. "This registry and data can be used in follow up studies to look at the natural history of the disease or develop ways to predict who will have recurrence or complications. The consortium represents a wonderful platform by which new and improved therapies as well as more established therapies for IBD can be critically evaluated and assessed."
IBD is a group of intestinal disorders that causes inflammation of the digestive system. Crohn's disease and ulcerative colitis are two major diseases classified as IBD. Inflammation or destruction of the bowel wall, as a result of IBD, can lead to deep ulcerations (sores) and narrowing of the intestines. In children, IBD can cause growth failure including malnourishment, severe weight loss, a delay of puberty and overall stunted growth when an adult.
According to the American Gastroenterological Association, 15-30 percent of patients with IBD have a relative with the disease. Although the causes of IBD are unknown, one theory suggests a genetic basis.
Dr. Gold notes that several Pediatric IBD Consortium participants have received National Institutes of Health grants, and they will continue ongoing collection of data by enrolling more patients into the registry.