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National Registry to Track Eosinophilic Disorders

Tuesday, May 18, 2010

A new nationwide registry will allow researchers to conduct larger, more effective studies of often misdiagnosed disorders that affect thousands of children in the United States.

With a $1.6 million NIH grant, part of the American Recovery and Reinvestment Act of 2009, Cincinnati Children’s Hospital Medical Center is launching the Registry for Eosinophilic Gastrointestinal Disorders (REGID).

The first of its kind registry will serve as an information resource for patients and families living with eosinophilic disorders and will give the families opportunities to participate in research studies across the country.

The new registry will help accelerate the translation of research into better treatments, as researchers will have the ability to conduct large-scale clinical trials with participants from patient bases to which they wouldn’t otherwise have access.

“This registry provides the infrastructure necessary for understanding and treating eosinophilic disorders at a national level, and eventually, at the international level,” says Marc Rothenberg, MD, PhD, Director of the Division of Allergy and Immunology and the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s.

Eosinophilic disorders occur when the body’s immune system mistakenly treats nutritious food as a dangerous foreign invader. As a result, the body produces an excess of eosinophils, a type of white blood cell that can cause chronic inflammation and tissue damage.

James Franciosi, MD, MS, a gastroenterologist with the Center for Eosinophilic Disorders and co-developer of the registry, says the data obtained from the registry will serve as an educational resource.

“Eosinophilic disorders are often misclassified as other conditions,” Franciosi says. “As larger multi-center studies are conducted through the registry, we will gain more information about symptoms, quality of life and the effectiveness of treatments. We also will be better able to conduct long-term follow-up.”

Cincinnati Children’s is a world-renowned center for research and treatment of eosinophilic disorders and was the first such dedicated center, seeing patients beginning in 2000. A multi-disciplinary team of specialists now sees as many as 50 cases a week, many of whom travel from across the country and around the world for treatment.

The website for the Registry for Eosinophilic Gastrointestinal Disorders goes live this week, in conjunction with National Eosinophilic Awareness Week.