CINCINNATI, Feb. 28, 2015 /PRNewswire-USNewswire/ -- 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.
CEGIR (U54 AI117804) is part of the Rare Diseases Clinical
Research Network 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).
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 and 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.
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SOURCE Cincinnati Children's Hospital Medical Center