New Patient Contact Registry for Rare Eosinophilic Gastrointestinal Diseases
Saturday, February 28, 2015
CINCINNATI - 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: https://registries.ncats.nih.gov/. 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.
CEGIR (U54 AI117804) is supported by the National Institute of Health through its National Center for Advancing Translational Sciences’ Rare Diseases Clinical Research Network.
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).
About the Rare Diseases Clinical Research Network
The Rare Diseases Clinical Research Network (RDCRN), an initiative of Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences (NCATS), is made up of 22 distinctive consortia and a Data Management and Coordinating Center that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities.
About Cincinnati Children’s
Cincinnati Children’s Hospital Medical Center ranks third in the nation among all Honor Roll hospitals in U.S. News & World Report’s 2014 Best Children’s Hospitals. It is also ranked in the top 10 for all 10 pediatric specialties. Cincinnati Children’s, a non-profit organization, is one of the top three recipients of pediatric research grants from the National Institutes of Health, and a research and teaching affiliate of the University of Cincinnati College of Medicine. The medical center is internationally recognized for improving child health and transforming delivery of care through fully integrated, globally recognized research, education and innovation. Additional information can be found at www.cincinnatichildrens.org. Connect on the Cincinnati Children’s blog, via Facebook and on Twitter.