CEGIR launches patient contact registry for people with eosinophilic gastrointestinal diseases

To coincide with Rare Disease Day® 2015, the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) today launched a patient contact registry for individuals with eosinophilic gastrointestinal diseases (EGID), a group of rare diseases.

The registry is located at: www.rdcrn.org/CEGIR. Its purpose is to create a single, international database with information submitted by patients with EGID and their families. Establishing such a database will enable CEGIR investigators to identify and recruit patients with EGID for new research studies directed towards improving treatments and clinical care.

For enrolled patients and caregivers, the registry offers the opportunity to receive direct notification of research studies for which they might be eligible, periodic research updates, patient advocacy information, and the ability to contribute to EGID research/investigator training.

Eosinophilic gastrointestinal diseases are chronic, inflammatory conditions. They are believed to be triggered by allergic hypersensitivity to certain foods and an immune response that results in an excessive number of white blood cells - eosinophils - accumulating in the gastrointestinal tract. EGIDs cause a variety of symptoms, often severe, including reflux-like symptoms, vomiting, difficulty swallowing, tissue scarring, fibrosis, the formation of strictures, and diarrhea. In children, EGIDs can result in growth issues and failure to thrive. Many patients with these conditions must rely on costly nutritional formulas instead of eating food.

"This registry will transform our ability to develop the best diagnostics and treatments for EGIDs by improving the way in which patients with EGID and their families can contribute and be involved in the efforts to understand these diseases," said Marc Rothenberg, MD, PhD, Director of Allergy and Immunology and the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children's Hospital Medical Center.

"As physicians and researchers, we are only a part of the EGID community. This registry will bring us together with others to collectively take the next big leaps forward," added Rothenberg, who also is principal investigator of the National Institutes of Health Grant that funds the CEGIR (U54 AI117804).

The research consortium and new patient registry are significant developments for the EGID community and offer patients the unprecedented opportunity to participate in the research process, according to Rothenberg. Patients also will be able to provide targeted input and have increased visibility to ongoing work.