NDLI: Creating a multi-center rare disease consortium – the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

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Creating a multi-center rare disease consortium – the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Content Provider	Semantic Scholar
Author	Cheng, Katherine Gupta, Sandeep Kumar Kantor, Susanna Kuhl, Jonathan T. Aceves, Seema S. Bonis, Peter A. Capocelli, Kelley E. Carpenter, Christina L. Chehade, Mirna Collins, Margaret H. Dellon, Evan S. Falk, Gary W. Gopal-Srivastava, Rashmi Gonsalves, Nirmala Hirano, Ikuo King, Eileen C. Leung, John Krischer, Jeffrey P. Mukkada, Vincent A. Schoepfer, Alain M. Spergel, Jonathan M. Straumann, Alex Yang, Guang-Yu Furuta, Glenn T. Rothenberg, Marc Elliot
Copyright Year	2017
Abstract	Eosinophilic gastrointestinal disorders (EGIDs) affect various segments of the gastrointestinal tract. Since these disorders are rare, collaboration is essential to enroll subjects in clinical studies and study the broader population. The Rare Diseases Clinical Research Network (RDCRN), a program of the National Center for Advancing Translational Sciences (NCATS), funded the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) in 2014 to advance the field of EGIDs. CEGIR facilitates collaboration among various centers, subspecialties, patients, professional organizations and patient-advocacy groups and includes 14 clinical sites. It has successfully initiated two large multi-center clinical studies looking to refine EGID diagnoses and management. Several pilot studies are underway that focus on various aspects of EGIDs including novel therapeutic interventions, diagnostic and monitoring methods, and the role of the microbiome in pathogenesis. CEGIR currently nurtures five physician-scholars through a career training development program and has published more than 40 manuscripts since its inception. This review focuses on CEGIR's operating model and progress and how it facilitates a framework for exchange of ideas and stimulates research and innovation. This consortium provides a model for progress on other potential clinical areas.
Starting Page	141
Ending Page	155
Page Count	15
File Format	PDF HTM / HTML
DOI	10.3233/TRD-170016
Alternate Webpage(s)	https://content.iospress.com/download/translational-science-of-rare-diseases/trd016?id=translational-science-of-rare-diseases/trd016
PubMed reference number	29333363
Alternate Webpage(s)	https://doi.org/10.3233/TRD-170016
Journal	Medline
Volume Number	2
Journal	Translational science of rare diseases
Language	English
Access Restriction	Open
Content Type	Text
Resource Type	Article

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