Resources to Broaden Your Knowledge of EGIDs
The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) is dedicated to improving the lives of individuals with eosinophilic gastrointestinal disorders through innovative research, clinical expertise and education via collaborations between scientists, health care providers, patients, and professional organizations. The disorders CEGIR focuses on are eosinophilic esophagitis (EoE),
Eosinophilic gastritis (EG) and eosinophilic colitis (EC). The team has a multidisciplinary approach and integrates expertise in pediatric and adult clinical specialties, including gastroenterology, allergy, immunology and pathology. Funded by the National Institutes of Health (NIH), CEGIR is part of the Rare Diseases Clinical Research Network (RDCRN).
CURED both supports and is a part of the Consortium of Eosinophilic Gastrointestinal Researchers (CEGIR). CEGIR was founded in Fall 2014 with an NIH grant (U54 AI117804) and is believed to be the first to establish a network focusing on the three distinct diseases of eosinophilic esophagitis, eosinophilic gastritis, and eosinophilic colitis. CEGIR furthers research and clinical expertise, trains clinical investigators, supports pilot clinical research projects, and provides access to information related to eosinophilic disorders for basic and clinical researchers, physicians, patients, and the lay public.
The grant is funded by the Office of Rare Diseases Research, which is part of the NIH’s National Center for Advance Translational Studies, as part of the Rare Disease Research Network. This award is co-funded by the National Center for Advancing Translational Sciences, National Institute of Diabetes and Digestive and Kidney Diseases, and the National Institute of Allergy and Infectious Diseases. CURED is one of the patient advocacy organizations that contributes meaningfully by leading from within CEGIR and also donates $25 thousand to CEGIR’s initiatives. Coinciding with Rare Disease Day® 2015.
CEGIR PARTNERS WITH CEGIR
CEGIR launched a patient contact registry for individuals with eosinophilic gastrointestinal diseases. The registry is located at www.rdcrn.org/CEGIR, and its purpose is to create a single, international database with information submitted by patients and their families. Establishing such a database will enable CEGIR investigators to identify and recruit patients for new research studies directed towards improving treatments and clinical care.
Outside Resources
Eos Network - United Kingdom
AusEE Inc.-Australia
International Eosinophil Society, Inc.
American Academy of Allergy, Asthma, & Immunology
Food Allergy Research & Education (FARE)
Food Allergy & Anaphylaxis Connection Team (FAACT)
North American Society For Pediatric Gastroenterology, Hepatology & Nutrition
The National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.
CEGIR REGISTRY
“The Patient Contact Registry is a critical tool to help advance EGIDs research efforts. CURED is actively involved in the work CEGIR is doing and we are excited to encourage the use of the registry. This is an important and exciting development for the EGID community. Patients and parents want to hear about the research, they want to be asked for their input – they want to be active participants in the research process. This registry offers our patient community the opportunity to have substantially greater visibility to ongoing studies and to have that information placed directly in their inbox. We strongly encourage everyone who has been diagnosed with an EGID to enroll.” – Ellyn Kodroff, President and Founder of CURED