Rare Disease Network Adds Patient Contact Registry
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 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.
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.
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.
CEGIR is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences. The network 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. 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.
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., Director of Allergy and Immunology and the Cincinnati Center for Eosinophilic Disorders at Cincinnati Childrens Hospital Medical Center.
The registry is available here.
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.
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.
CEGIR is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences. The network 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. 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.
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., Director of Allergy and Immunology and the Cincinnati Center for Eosinophilic Disorders at Cincinnati Childrens Hospital Medical Center.
The registry is available here.
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