The University of Iowa has created the first patient registry to study a rare disease in children affecting the pancreas.

The pediatric pancreatitis registry is being organized by Aliye Uc, associate professor of pediatrics and pediatric gastroenterologist at the University of Iowa Children's Hospital, who obtained a $275,000 grant from the National Institutes of Health to create a consortium that includes 15 academic institution, including centers in Australia, Canada, and Israel. The UI is the coordinating center.

“It’s been a passion of mine, and I just feel very strongly that we need to do something about pediatric pancreatitis that remains a mystery to physicians and is a terrible burden on kids and their parents,” Uc says.

Pancreatitis causes swelling or irritation of the pancreas, an organ that aids in digestion and helps regulate blood sugar. Those with the disease can suffer from severe abdominal pain, nausea, and vomiting.

The disease is considered rare in children. Recent studies, though, have shown that the number of pediatric pancreatitis cases has increased, and children now contract the disease almost as often as adults (approximately 1 in 10,000). The increase may be due to more accurate diagnoses and testing for rare diseases, according to some studies.

Uc got involved in the cause after attending the 2009 PancreasFest in Pittsburgh. While there, she learned about research in adult pancreatitis, but she became concerned after hearing nothing about the disease in children.

She initially formed a group to study pediatric pancreatitis; it has defined different forms of pancreatitis for the first time in children as well as developed standardized patient and physician questionnaires to evaluate the causes of pediatric pancreatitis, its demographics, responses to treatments and natural progression of the disease.

The registry is the group’s latest accomplishment. Uc has recruited 13 patients in Iowa, and 44 other patients have been enrolled at seven other centers. The consortium aims to have 350 patients in the registry within the two-year window of the grant.

“In the long-run, when a child with pancreatitis is admitted, we won’t have to go by anecdotal and past experiences, results from old studies, and data derived from the adult population. Instead, we’ll have a collection of recent and pertinent data that will offer a new alternative to making a difference in these kids’ lives,” Uc says.

The registry is supported in part by the UI’s Institute for Clinical and Translational Science.