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

Type of publication Peer-reviewed
Publikationsform Original article (peer-reviewed)
Author Cheng Katherine, Gupta Sandeep K., Kantor Susanna, Kuhl Jonathan T., Aceves Seema S., Bonis Peter A., Capocelli Kelley E., Carpenter Christina, 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, Spergel Jonathan M., Straumann Alex, Yang Guang-Yu, Furuta Glenn T., et al. ,
Project Defining clinically meaningful therapeutic endpoints in Eosinophilic Esophagitis
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Original article (peer-reviewed)

Journal Translational Science of Rare Diseases
Volume (Issue) 2(3-4)
Page(s) 141 - 155
Title of proceedings Translational Science of Rare Diseases
DOI 10.3233/trd-170016

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.
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