New patient contact registry for rare eosinophilic gastrointestinal diseases
The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) has 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. The database will enable CEGIR investigators to identify and recruit patients with EGID for new research studies for 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. Patients also will be able to provide targeted input and have increased visibility to ongoing work.
Eosinophilic gastrointestinal diseases are chronic, inflammatory conditions 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 often severe symptoms including 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, M.D., Ph.D., director of allergy and immunology and the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children's Hospital Medical Center.
Rothenberg also is Principal Investigator of the National Institutes of Health grant that funds the CEGIR, which is part of the Rare Diseases Clinical Research Network (RDCRN) at the National Center for Advancing Translational Sciences (NCATS). NCATS is funded through a collaboration of the National Institute of Allergy and Infectious Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, and is an initiative of the Office of Rare Diseases Research.
CEGIR includes clinical researchers from Cincinnati Children's, Ann & Robert H. Lurie Children's Hospital, Children's Hospital Colorado, Children's Hospital of Philadelphia, the National Institutes of Health, Northwestern University, Rady Children's Hospital, Riley Children's Hospital, Tufts University, the University of North Carolina and Bern University, Switzerland. CEGIR also works closely with a number of strong patient advocacy groups, including the American Partnership for Eosinophilic Disorders (APFED), the Campaign Urging Research for Eosinophilic Disease (CURED), and the Eosinophilic Family Coalition (EFC).
RDCRN, an initiative of Office of Rare Diseases Research (ORDR) at the NCATS, is made up of 22 distinctive consortia and a Data Management and Coordinating Center working in concert to improve availability of rare disease information, treatment, clinical studies and general awareness for both patients and the medical community.